Buzz, Buzz, doodle-dang

One day I was sitting around doing whatever it is I do while I'm sitting around, when I hear the familiar "buzz, buzz, doodle-dang" on my phone announcing that I've just received an email.  Typically, I don't pay much attention to much of anything that my phone does, and today was no different. Since I've been signed up for every single possible companies email I get approximately 573 billion emails a day. So one doodle is no different from another ones dang. 

Like always, I continued doing whatever it is I do, sometimes that's working, sometimes it's making things, sometimes it's swearing so much it makes a sailor look prude. Yet I always hear 'Good things come to those who wait.' Lately I've been at the point where I say 'suck it' to that. I did every single thing I was supposed to do. Everything. So how can I possibly be a role model to my kiddo and encourage her on 'what to do' when I did that, and I have a steaming pile of shit to show for it. 

Let me spell this out a bit more. To get a good paying job, we are taught to go to college after high school. I went to college. Then I went to grad school. So I did more. We are told to be innovative, to stand out, to create, design, make our mark- I did just that, I designed curriculum that is used district wide to this day because of my innovative, positive ideas had made such a significant difference; those were going to be brought up to the governor even! Impressive right? Meh. 

Every school I worked at I found fatal flaws at. Every time I brought those up I was put in a position in which I needed to find another job. Administrators, I found, don't like it when they learn that very bad things are happening at their schools. My students loved me, I made a huge difference, I made people aware of things that were being covered up, and sure enough, I was always looking for another job at the end of each year. I am ok with that because I know that I did exactly what was needed for those kids. In 2 separate schools alone I was told by my administration not to file abuse charges on children which clearly had physical marks on their bodies of being hit.  When the MS joined me, it got rather difficult to make good on work, and allow myself the time and rest that I needed in order to heal and give me the strength I need to go to work everyday. I told no one about this infestation on my sheath, as it is not required, and continued to do my job with much praise from parents and students. And at the end of every year I was out of a job because I stuck to my training, and did what was right. 

The loss my job, and income, came with a massive price. It was more frightening than waking up with a gaggle of hungry zombies staring down at me while I slept.  I would suddenly wake up and realize that the shit has definitely hit the fan. Again.  

This is not what I had in mind when I went to college and grad school. That's what we are supposed to do right? We are supposed to go to college so we can get good paying jobs, live in houses with the rooms upstairs, a fireplace and family room downstairs, a garage, landscaping, yearly vacations, 2.3 kids and a dog named spot. I did what I was told. I have that dream of that house in my head, I have things I want to do, I have goals, I have a future. I thought. My reality is that I am scared beyond belief that none of it will never happen for me because I am actually closer to being homeless than living the dream I worked so hard for, and and in permanent debt for. Don't feel sorry. Feel angry. And donate to the charities of your choice so scientists can do research and help keep people like me from homelessness.I don't care which- cancer, MS, Alzheimer's, whatever. Any amount you donate helps someone like me stay from becoming homeless and getting well. 

Dan is the smartest person I know. He reads Nietzsche for fun for crying out loud. But, he isn't over educated like me. So when I lost my job, we lost 2/3rd of our income. And we have lived like that ever since. Let me just say that it sucks. Do we pay utilities this month and not gas so that we can get food? Or, do we skip food so that we can have heat? How much food can we grow so that we wont have to buy it? But wait, that just made the utilities go up. Shit, the dog completely tore his ACL and needs surgery. Guess what we can't pay for because we declared bankruptcy due to all the damn medical bills. 

I never see my husband. He is always working. Early morning until late at night. He's been at the same place for over a decade. He got less than 10 cents for a raise last year. Geez, that's helpful. Dan has Chrohn's disease, so he has his own demons do battle. Did I mention how hard he works? And for what? We don't live outside of our means, just in a constant state of stress.

I tell you, for doing exactly what I was supposed to do, why on earth would I encourage my kid to follow this same path? Look where it got me. Yeah! Go to college kiddo! Then you can be so stressed out for the rest of your life because you won't know how the hell you'll pay for the next months bills/food/ or rent. Why the hell would I tell her to go to college? To make things worse, there are plenty of people that just don't understand my situation. They're the 'know-it-alls', you know, the ones with all the advice, tell me exactly what I need to do with my life, let me know I don't want it badly enough, then talk so poorly behind your back it doesn't matter what I said in the first place. These are the people that have never once asked me a single question, or walked 10 feet in my shoes let alone a mile. But always the first to judge and accuse.

My car broke down a year ago. I paid for that car with an inheritance I received when my grandfather passed away. I thought it was a wise investment. And it was. Until I threw a rod. There is no coming back from that, so I had a huge pile of metal and plastic shit sitting in my driveway. Having learned how to be frugal I found my dream car- $42K Volvo XC-90- oh man this thing was beautiful! Alas, I cannot afford $42K to save my life. So I kept looking. I found one, for $9K. Those of you who wonder how on earth I can afford such an expensive car (I'm not driving a porche for crying out loud) it's because I do loads of research. And my husband and I shared one car for years until we finally bit the bullet and bought another. Man, did I got a lot of shit for buying such a fancy car.... All I could do was laugh. People are quite judgemental with zero basis.  

I live in a neighborhood where every single house looks exactly the same. My street looks like a slightly glorified trailer park. I have the best neighbors in the world, and I have done all the work on my house myself. I have made a loving, comfortable space that once you've been, you never want to leave. But, I am faced with losing my home every single month because I cannot work. 

Some of you reading this won't give a rat's ass, and will actually hope for that to happen, and I really hope that all the weirdness that you harbor doesn't give you a heart attack which leaves you dead. Perhaps just the heart attack part and a new outlook on life. I've know some pretty rotten people in my life and it would take something like a heart attack to pull that hatred out of their ass and figure out that life is more about helping others, than hurting. 

So yep, life is constantly desperate for me, I am not at a place in my life to be able to accept higher messages from various guru's when I am worried about my basic safety needs being met. I do appreciate being thought of tho. And since things have been so desperate for so long, and I refuse to live like this, and I am in no shape to do much, I applied for social security disability, and I won. It's still a waiting game at this point, and I have no clue what my benefits will be, when they will start, nothing. But, I won. The lawyer and judge both told me that they've never had a person with a superior IQ come in an not be employed. I didn't know whether to take that as a compliment, or a diss.

So that's what I've been doing since my neurologist suddenly halted my CCSVI surgery with the promise of more, and better treatment, and I was asked to give the doctor a chance? Yeah, I remember that too. Let me give you a lists of treatment and tests that I've had since he abruptly stopped my surgery. I want it to be crystal clear how seriously this was taken on my doctors behalf:


___________________________________________________________

Pretty impressive list right? Yes, I've left my neurologist and taken matters into my own hands. Before I get into that, why not chat about the other things that have been going on in my life...

As you all know, my family took a much needed vacation to Hawaii. Absolutely nothing could dampen our excitement :) It was exactly what we needed to do at that time, and it was perfect. We stayed in a condo right on the ocean in S. Kihei, Maui, HI. The Kamaole Sands. It was FABULOUS. We had everything we needed and more. Our mornings were spent on the lanai surrounded by all sorts of wild birds, the refreshing breezes of the ocean floating in the air, and the delightful Hawaiian sun. Followed by a stroll along the beach, a swim in the ocean, and making friends with local sea creatures. 

I took thousands of photo's and shared our journey with my friends and family on FaceBook and Instagram. Hopefully everyone was able to take a peek at our adventures. The photos are still available for viewing in case anyone missed them. 

To summarize our trip into one word I would have to say rejuvenating. Hearing that home was experiencing record snowfall amounts while we were basking in the sun, exploring lush jungles and waterfalls, spotting whales and sea turtles, and deciding if we needed to change out of our bathing suits, or just throw on shorts and flip flops, made our time spent in Hawaii that much more enjoyable. 

Rejuvenating in the Hawaiian tropics really bolstered my strength to face the challenges that I knew were awaiting me at home. I hit the ground running with my primary care physician by discussing whatever tests, scans, blood work, and so forth, that I should consider and make that wheel squeak until I had those things done, in order to finally be able to get my 'roto-rooter' surgery that I've had put off time and time again.  Well folks, one surgery, 974 pints of blood, 13 billion x-rays, and an MRI or two later, one back surgery, ambition that doesn't quit, and a fire that refuses to burn it, I read that doodle dang email, I am happy to report that it's finally happening!!! I am getting my CCSVI surgery. Talk about a long dramatic pause between start and finish. 

Tomorrow morning I will be getting this long overdue surgery. My goal was to raise $10,000K and I didn't quite get there. I am about $3K short. I've already declared bankruptcy for medical bills, so all that will happen is I'll get sent to collections for the remaining portion that I cannot pay. And perhaps have a need to declare bankruptcy again.

I had a lot of promises from people about various things that they would do to help me raise the rest of the funds. What I learned is that there are a lot of people that would really like to help, but find out how difficult it really is to make it happen. I adore each and every one of you. Even the nasty bitches with not a kind bone in their bodies. Without all of you, this wouldn't have happened. I needed the kindness to keep going, I needed the nasty bitches to give me a good laugh, I need the trip to Hawaii to rejuvenate my soul, and I needed to fire my neurologist and take matters into my own hands. So I might be an over educated, intellectual pauper, but I've found my job... It's me. I am my advocate. And I am getting my surgery tomorrow. Wish me luck and I'll see you on the other side my lovelies! 

I'd ask for more donations, but at this point, it's not worth it. Personally, I'm sick of asking for help, and I'm sure everyone is tired of seeing requests for donations time and time again. I am honored by the $7K I raised, for the patience, prayers, and love from all of my friends and family, and the enemies I've made. They help too! I look forward to sharing with everyone the impact my surgery had :)  Thank you all again! 

Much love, 
Sonja 
  

Absolutely Everything About Absolutely Nothing

I always hate April. April 15th specifically. Stupid tax day. Dan and I NEVER get a tax refund. I don't know if that's a good, or a bad thing. I suppose economists and accountants would claim it's good, that I'm not giving the government free money as they get to keep the interest earned off my 'over payment' in taxes. Pfft. What do they know. But, over the years I've just gotten used to having us break even, or maybe get $50 bucks if it's a red letter year. But something weird happened this year... we hit the tax return lotto. We got, dare I say, an actual REFUND! And, like any well-rounded adult, we thought that paying bills was the responsible and wise thing to do. When we stopped laughing at the thought of us being responsible and wise, we booked ourselves a trip to Maui, courtesy of our 2012 tax refund.

The second rarest thing in the Armstrong household is the Armstrong family going on a vacation. Unless you count me driving to the grocery store alone. It just doesn't happen. Don't get me wrong, we talk about it all the time, how great it would be to kiss the Blarney stone, to see the castles in Europe, to go on a safari, or muck about in Great Britain. Hell, it would be fun staying stateside and exploring the natural (and man-made) wonders here at home! I guess the nicest way to say it is this: we need a vacation to sit on our asses and do nothing. We've had so much shit happen that a whole lot of nothing sounds absolutely perfect. No kissing, no mucking, no exploring. Hence, Maui. It's perfect. I think the universe agrees that it's our time to go too.

Everything here in Colorado will still be here. The stupid doctors that can't figure out what's going on with me will all be here (and still have the same lack of information). Working from home allows work to go with me to Hawaii if I wanted it too (nope)... and Chloe is home-schooled so the island will be a learning tool/educational experience... aren't you jealous you didn't get a field trip to Hawaii? The timing is right and the refund was the impetus for our journey.

The older I get the more I think that it really is important to take time away from the stress of the daily grind. Even if it's just a few days, it is still very much necessary in maintaining health and happiness. Dan and I just got lucky this year. And hopefully whatever we gain from our respite will stick with us and keep us motivated to make it happen more frequently. I'm not saying it will cure all of our ails, but the stress has got to be responsible for a chunk of what ails us. Lord knows that a break from that certainly cannot hurt.

I've also decided to see a nutritionist. She's approximately 473 years old, in incredible health, and decided that my family really needed her services, so she squeezed us in. I won't see her for another month. I get the feeling I'll get more from visiting with her than I've gotten from seeing the doctors.
For example, I'm still waiting to find out if I have pulmonary hypertension. This, of course, is what is holding up surgery... I don't feel like having a stroke on the operating table. Call me crazy. I bet the nutritionist will be able to figure a few things out about me in my upcoming hour long visit.

So until I see the nutritionist, figure out if I have hypertension, and try to keep up with work at home and homeschooling, I will sing the praises of the refund Gods for giving me the much needed gift of a Hawaiian vacation.  I won't stress that my body isn't made for a bathing suit, or that my luggage might get lost along the way... I'll just pack some flip flops and a swim suit in my carry-on and enjoy absolute everything about absolutely nothing.

Wagging fingers and telling lies

So it's the end of the year and what have I learned? That I'm no closer to an answer, I'm still naively trusting of people, and my patience is still intact.

Remember when I was complaining about having my life turned upside down, shaken, and shit hitting the fan? Well, that was merely practice for what was to come. Since I've last posted a blog 37 million years ago I've been through a few changes (to say the least)...

Let's start with the health thing because I know everyone wants to know what's up with the surgery. Yes, I am rescheduling the surgery. No, I can't have it yet. Somehow this idea of pulmonary hypertension has become lodged into the brains of my medical entourage. So a really long story short- they think I might have pulmonary hypertension... if I do indeed have pulmonary hypertension and introduce a catheter to clear my innards, then what could occur is that the newly cleared arteries would result in more blood rushing through my arteries causing a rapid increase in pressure and giving me a stroke. Since I'm in no hurry to experience a stroke (ever), I'm willing to get this checked out to the fullest extent. Stroking out on an operating table happens to be one of the risks of this procedure. So, no thanks. I'll wait.

Now we are all caught up. On health anyway. So what the hell took me so damn long to tell you 7 sentences worth of information? All the other shit that comes with hosting a beating heart, functioning brain, working lungs, or more simply- life.

Shortly after my need to reschedule my surgery my daughters life took a turn for chaotic... not being one to sugar coat things I'll just lay it out there. Feel free to drop your jaw, get pissed, swear even... Lord knows I did. First, I'll give a bit of background info. that I think is relevant. Chloe will be getting a full psychological workup. She's an intense, serious, sensitive kiddo that really requires a certain approach. She doesn't handle, or deal with things like most people. There is something there that I'd like to discover so that I can help her, communicate with her, and approach her in ways that would be the most helpful and benefit her in meaningful ways. Anyone that has ever met Chloe knows what I'm talking about... there is just something there.

Chloe has been at the same school for her entire educational career. I'm that neurotic parent that helicopters around and gives her teachers every minute detail of her existence. Including that she needs a very specific approach. Chloe had certain legal provisions spelling all this out (which I had to fight tooth and nail for) which I also made sure her teachers were aware of... I was surprised with the start of this school year when her new teacher actually called me to go over this information! Never had this happened before! Finally, I had a teacher that was on the ball! We had a great conversation, I let her know what Chloe needed, even though it was spelled out for her, and was happy as a clam when school started and Chloe was left in such proactive hands! Then the fits. Then the fights. Then the headaches, migraines, severe stomach pains, and demon child appeared. It was only September.

If there was an available doctor, Chloe was there. She had so many ailments in the first few weeks of school it was like Satan had taken up shop in Chloe's innards. Knowing a thing or two about kids behaviors I decided to observe Chloe in class too. I didn't want to leave anything out. Here is where it gets interesting... I witnessed several occasions of Chloe's teacher bullying her. Yes, I said bullying. Not only that, I had the classroom door slammed in my face, I was told that I was not allowed in the classroom, and I watched this 'teacher' wag her finger and chastise my child, belittle her, demean her character, and wipe the floor with her fragile self-esteem. No wonder Chloe was acting out and manifesting physical symptoms! She was being bullied by a person in a position of trust! Lasers shooting out of your eyes and swearing with disbelief yet? Yeah... me too. It gets better though!

The school reacted like this "If this teacher were indeed a bully, why do we not have 26 other families complaining?" My response- "Because 26 other kids aren't the target." We got nowhere. So after this outrageous behavior, no help from the school, and a child on the verge of a breakdown, we withdrew her from the only place she'd ever known. Enter the private school- Yes, Chloe was accepted. However, every time I went she was alone. She always had a million miles between her and the other students. She would always say "I don't mind being alone all the time mom. It's ok." No Chloe, it's not. The teachers were not helpful with the situation either. Chloe has a terribly hard time making friends as it is... so here she is in a new place, and not one person to talk to, and the teachers blew her off saying 'it's just a kid thing.' Then another bomb dropped...

Chloe's former school sent her new school information stating that Chloe was a 'severe behavioral problem. with 'doctor documentation' to support their claims. Now one lovely thing about her old school was this- behavior reports. Weekly behavior reports. Weekly behavior reports that required a parent signature no matter what the behavior. I've known every week since Chloe began school exactly how she behaved. Imagine my surprise when the new school informed me that my rule following, never once in trouble child was now a 'severe behavioral problem' not too mention my ridiculous belief that I'd somehow have to be aware of any doctor's examination and opinions. I'm absurd in thinking that I'd have to give my permission for such testing to be done. Silly me right?

Basically it is this- I blew the whistle on a beloved teacher and they retaliated by sending documents to her new school that would have her dismissed. Guess what happened? That's right! They dis-enrolled her stating that I was dishonest. When I asked to see this information they would not share it with me. They even went so far as to state Chloe was showing signs of school phobia at school because she was absent one day. Ummm what? It appears that the enrollment committee are all now a child psychiatrists. Stab me.

I was furious. First my kiddo is bullied, then the former school has the balls to lie and send false information to the new school, then the new school kicks her out!?!?!?!?! Yes they did, and yes they did. Talk about doing what's right for kids. Chloe is the one that had to endure all of this, and do her best to understand. She tries to comprehend that this isn't about her, that she, in fact, did nothing wrong. Now try making her believe that she is one kick ass human being! Not easy. She's hurt and she blames herself. It doesn't matter what I say- but every day of her life I remind how incredible she is, and that she's an amazing person inside and out.

She is home-schooled now. Nothing I ever imagined I'd ever do... and it's the most wonderful, hardest, entertaining, trier of patience ever known to man. She's not had any migraines, and her stomach ailments appear to have disappeared now. It's incredible! However, she misses the shit out of her friends. I enrolled her in a home school program that has her go to 'school' one day a week with other home schooled kids. She does nothing but fun things all day. It's just not the same. She misses her friends. She wants her buddies back. She misses the boy she's had a crush on since first grade. She misses her best friend. She even misses the kids that annoyed her. She wants her life back. I can't take her back there. Not next year, not ever. It's not right. She feels punished. It's been a struggle all around. It's been a struggle dealing with the social components of everything. And it tears me apart seeing her so lonely and unhappy about missing her friends. Everyone has their lives, people are busy, and it's hard to fit play dates in around all that. Being an only child doesn't help things much either. We've found a lot of support from many unexpected places, and we've lost some friends along this new journey.

So that's where I've been. Working from home, home schooling, and trying not to blow up from the inside.

I'm working on blood tests, heart tests, and math, English, science, and history tests now too... Keep us in your thoughts and feel free to donate as I still know that I will have this much needed surgery done! Life just had other plans for me for the time being... my daughter will always come first. I know you all can understand.

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!)

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.

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.

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