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!)
Tuesday, September 18, 2012
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.
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.
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
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
Monday, August 27, 2012
Half-inated...
Recipe for a Sonja Zombie:
3/4 cup Brain Fog, 2 tablespoons Distract-ability, 1 Spouse, 1 Daughter, 2 Dogs, 1 Bucket of Cats, 35 gallons of gurgling fish tank, TV whoosh noise, crickets chirping in my brain, 4 cups Forgot What I Was Doing, 3 tsp. What's That Word, and 1 Sonja. Mix well. If you forgot, set oven to 325 degrees. Now, sift in- oh shiny pretty thing! I think I have to pee. Looks like it's my turn on Words with Friends again! Oh a FaceBook notification! Yes dogs, I will let you in, out, in, out, in, out, and back in. Does anyone know why the oven is on? I'm definitely not caffeinated, I'm half-inated.
Yes, the joys of sleep deprivation are upon me. School started and my world is upside down. I've been trying to write for the last several days. I really shouldn't ever 'promise' to write. Ever. Not only do I draw a blank, but life things seem to pop up more. When I've actually tried to sit and write this week it has been indescribably infuriating. I want to lash out at the world "SHUT UP FOR ONE DAMN SECOND!" Sleep deprived and trying to focus long enough to write have only equaled a really pissy Sonja this week.
I cannot pinpoint one thing that's bothersome. It is nothing less than everything in the universe. The noise, the questions, the texts, the email, the tasks others want me to do... It is so hard to focus as it is. This week I have settled in to the Christopher Reeves (my computer desk chair is nicknamed The Christopher Reeves- if you saw it you'd understand) countless times, the blogger program open, the tabula rasa in between my ears refusing to create anything other than puffs of smoke within the confines of my skull. Bah. So I've become agitated.
I am going to generalize here. I believe that when a person is diagnosed with some form of ailment, illness, disease, or try to perform a daunting task, they go through the Kubler-Ross 5 stages of grief. Bargaining, Denial, Anger, Depression, Acceptance. Trying to write lately has landed me square in the Anger stage. I'm not angry about the MS, I'm more angry about how people (myself included) react to the half-inated, foggy Sonja, and the sometimes unrealistic expectations I've placed on myself. For example, thinking I could write a simple blog.
First Anger decides to visit. Anger comes when other people get upset with me for my halfination brain fog because they just don't understand, or haven't redefined what my new normal is. They still have me as my old normal. When I am in the angry stage here is what I'm thinking "Yes, I'm purposely taking my time responding to you. Yes, I'm ignoring you on purpose. I simply cannot multitask any longer just to tick you off. Yes, I purposely forgot to do that menial task you asked me to do. Yes, I forgot that word because I knew you'd get annoyed waiting for me to spit it out. I'm sorry that you've asked me to do favors for you, again, and I forgot to actually do them- or I've finally gotten so tired that I said no... I am glad that you're so selfish you don't realize the strain it's putting on me. I know, it's entirely my fault." Add a few colorful words in there and it's a bit more realistic.
Then comes my pal Denial "You know what Sonja, if you just sit here and type you can get it done. Sure, you can drive everywhere, pick up everyone's kids, watch the dogs and cats and fish and birds of the world, write a blog, take care of the house, market myself, work, research things that people have asked favors about... It's mind over matter. I'm totally fine. Just peachy"
When I'm hanging out with Denial my friend Depression gets sad (see what I did there) and pushes her way in. So Depression comes in and says "Sonja, I'm going to make you hit a really huge wall right about now. There there... you go ahead and cry. Why you? Well, why not you? Karma? Bad karma? What did you do that was so awful to deserve this Sonja? You know you aren't an angel. Really should've made some different choices... You know you can't do all that stuff anymore. Who are you kidding?"
Then Bargaining comes to town, beats down Depression, and takes me out for a night on the town. First we hit club "I promise to exercise more if XYZ", soon after we head over for some coffee at "I'll do anything if XYZ", which starts to feel a bit desperate and empty so we end the evening with "Please, I just want to be normal."
Good ole Acceptance finally decides to make an appearance. Acceptance changes: "I just want to be normal" to "MS is a part of me and I have a new normal now." Finally... I can breathe and move on. Until the next daunting task, or flare up is at hand. Then it's time to visit my friends all over again.
So where am I now? Who knows. These stages are fluid. I'd like to think I'm self-actualized and living nicely in Acceptance, but I'd be lying. Since school started I have to admit I've been in Anger and Bargaining a lot. Last night I could not sleep. 2 1/2 hours of sleep is all I could muster. I expected the MS fatigue train to hit me at Mach 7 today. Nope. Not once. So my new normal seems to be as spontaneous as me. It's hard to accept something that's not in stasis. Or is it?
This is a learning process for all of us. I'm not the same person I was. My character, humor, appearance, and whatnot are all the same, but what I am capable of doing has changed. And the time it takes me to do it has also changed. So I have a favor to ask... go into your brain and locate the Sonja file. Once you get there please delete the following files: multi-tasking, sentence completion, correct word usage, short-term memory, and whatever else I forgot. Here, read this excerpt from Staying Sharp with MS. It explains what I'm talking about.
Types of Cognitive Impairment Problems
MS symptoms involving cognitive impairment may include:
Maybe that will clear some things up. So no, I'm not a moron... Yes, I understand what you're saying to me, but please be considerate and turn off the TV, the radio, quiet the dogs, silence the bucket of cats, turn off the cell phone doodle dangs, blips, beeps, and bells, remember one person at a time can talk, oh- and keep it short and sweet. If that's too much to do would you please refrain from getting pissy with me when I get overwhelmed, overstimulated, and hang out with my buddy Angry? Otherwise, deal with the half-inated sentence stumbling forgetful Sonja who had good intentions of writing, but found the fog to be rather thick this week.
And as always, if you'd like to help me out so that my old normal is more normal than my new normal please donate to my surgery fund.
3/4 cup Brain Fog, 2 tablespoons Distract-ability, 1 Spouse, 1 Daughter, 2 Dogs, 1 Bucket of Cats, 35 gallons of gurgling fish tank, TV whoosh noise, crickets chirping in my brain, 4 cups Forgot What I Was Doing, 3 tsp. What's That Word, and 1 Sonja. Mix well. If you forgot, set oven to 325 degrees. Now, sift in- oh shiny pretty thing! I think I have to pee. Looks like it's my turn on Words with Friends again! Oh a FaceBook notification! Yes dogs, I will let you in, out, in, out, in, out, and back in. Does anyone know why the oven is on? I'm definitely not caffeinated, I'm half-inated.
Yes, the joys of sleep deprivation are upon me. School started and my world is upside down. I've been trying to write for the last several days. I really shouldn't ever 'promise' to write. Ever. Not only do I draw a blank, but life things seem to pop up more. When I've actually tried to sit and write this week it has been indescribably infuriating. I want to lash out at the world "SHUT UP FOR ONE DAMN SECOND!" Sleep deprived and trying to focus long enough to write have only equaled a really pissy Sonja this week.
I cannot pinpoint one thing that's bothersome. It is nothing less than everything in the universe. The noise, the questions, the texts, the email, the tasks others want me to do... It is so hard to focus as it is. This week I have settled in to the Christopher Reeves (my computer desk chair is nicknamed The Christopher Reeves- if you saw it you'd understand) countless times, the blogger program open, the tabula rasa in between my ears refusing to create anything other than puffs of smoke within the confines of my skull. Bah. So I've become agitated.
I am going to generalize here. I believe that when a person is diagnosed with some form of ailment, illness, disease, or try to perform a daunting task, they go through the Kubler-Ross 5 stages of grief. Bargaining, Denial, Anger, Depression, Acceptance. Trying to write lately has landed me square in the Anger stage. I'm not angry about the MS, I'm more angry about how people (myself included) react to the half-inated, foggy Sonja, and the sometimes unrealistic expectations I've placed on myself. For example, thinking I could write a simple blog.
First Anger decides to visit. Anger comes when other people get upset with me for my halfination brain fog because they just don't understand, or haven't redefined what my new normal is. They still have me as my old normal. When I am in the angry stage here is what I'm thinking "Yes, I'm purposely taking my time responding to you. Yes, I'm ignoring you on purpose. I simply cannot multitask any longer just to tick you off. Yes, I purposely forgot to do that menial task you asked me to do. Yes, I forgot that word because I knew you'd get annoyed waiting for me to spit it out. I'm sorry that you've asked me to do favors for you, again, and I forgot to actually do them- or I've finally gotten so tired that I said no... I am glad that you're so selfish you don't realize the strain it's putting on me. I know, it's entirely my fault." Add a few colorful words in there and it's a bit more realistic.
Then comes my pal Denial "You know what Sonja, if you just sit here and type you can get it done. Sure, you can drive everywhere, pick up everyone's kids, watch the dogs and cats and fish and birds of the world, write a blog, take care of the house, market myself, work, research things that people have asked favors about... It's mind over matter. I'm totally fine. Just peachy"
When I'm hanging out with Denial my friend Depression gets sad (see what I did there) and pushes her way in. So Depression comes in and says "Sonja, I'm going to make you hit a really huge wall right about now. There there... you go ahead and cry. Why you? Well, why not you? Karma? Bad karma? What did you do that was so awful to deserve this Sonja? You know you aren't an angel. Really should've made some different choices... You know you can't do all that stuff anymore. Who are you kidding?"
Then Bargaining comes to town, beats down Depression, and takes me out for a night on the town. First we hit club "I promise to exercise more if XYZ", soon after we head over for some coffee at "I'll do anything if XYZ", which starts to feel a bit desperate and empty so we end the evening with "Please, I just want to be normal."
Good ole Acceptance finally decides to make an appearance. Acceptance changes: "I just want to be normal" to "MS is a part of me and I have a new normal now." Finally... I can breathe and move on. Until the next daunting task, or flare up is at hand. Then it's time to visit my friends all over again.
So where am I now? Who knows. These stages are fluid. I'd like to think I'm self-actualized and living nicely in Acceptance, but I'd be lying. Since school started I have to admit I've been in Anger and Bargaining a lot. Last night I could not sleep. 2 1/2 hours of sleep is all I could muster. I expected the MS fatigue train to hit me at Mach 7 today. Nope. Not once. So my new normal seems to be as spontaneous as me. It's hard to accept something that's not in stasis. Or is it?
This is a learning process for all of us. I'm not the same person I was. My character, humor, appearance, and whatnot are all the same, but what I am capable of doing has changed. And the time it takes me to do it has also changed. So I have a favor to ask... go into your brain and locate the Sonja file. Once you get there please delete the following files: multi-tasking, sentence completion, correct word usage, short-term memory, and whatever else I forgot. Here, read this excerpt from Staying Sharp with MS. It explains what I'm talking about.
Types of Cognitive Impairment Problems
MS symptoms involving cognitive impairment may include:
- Short-term memory loss. This is the most common form of cognitive impairment. You draw a blank on a familiar phone number, forget whether you took your medication, or can’t recall why you left the living room to go into the kitchen.
- Mental fatigue. Cognitive impairment can cause “brain fog” or slow thinking. “In psychological tests, MS patients have been found to tire more quickly," says Dr. Sheremata, leading them to perform less well on tests of cognitive performance.
- Distractibility. You may have a hard time focusing on what you’re doing. Some MS patients with cognitive impairment issues are easily distracted by noise, such as the television or music. It’s also difficult for them to multi-task.
- Verbal fluency problems. You may have difficulty finding the right words in conversations or get lost in a middle of a sentence. However, people with MS are able to understand words they hear and read just as well as people without MS, says Sheremata.
- Impaired planning. People with this MS symptom can have trouble planning and organizing their day. Some research shows that up 40 percent of people with MS are less able to plan than people without MS.
- Complex problems. Mental MS symptoms can impact a patient’s ability to figure out a difficult problem. “You may feel overwhelmed if a problem is too complex and may not be able to come up with alternate solutions,” explains Sheremata. This can lead to poor judgment.
Maybe that will clear some things up. So no, I'm not a moron... Yes, I understand what you're saying to me, but please be considerate and turn off the TV, the radio, quiet the dogs, silence the bucket of cats, turn off the cell phone doodle dangs, blips, beeps, and bells, remember one person at a time can talk, oh- and keep it short and sweet. If that's too much to do would you please refrain from getting pissy with me when I get overwhelmed, overstimulated, and hang out with my buddy Angry? Otherwise, deal with the half-inated sentence stumbling forgetful Sonja who had good intentions of writing, but found the fog to be rather thick this week.
And as always, if you'd like to help me out so that my old normal is more normal than my new normal please donate to my surgery fund.
Monday, August 20, 2012
Killing curls and smearing lipstick
A huge source of my stress lately has been school. I know, I know, I've already gone to school, and beyond... but the kiddo has some massive changes to her schooling and it's got me in a tizzy. However, the child and I could not be any more dissimilar if we tried which might be a blessing.
I was in Mrs. Buchholtz's 5th grade class. She had bouncy reddish curls, wore red lipstick, dressed like she had money, and had the attitude that she wanted to be there...Naturally, I did my best to change all that. I was, in the nicest terms possible, an asshole. My poor mom was 'blessed' with 2 gifted kids. No one ever talks about the behavioral components of gifted kids. Let's just say that she had early onset of gray hair with all the challenges she endured from those 'gifts'. Since my daughter, though gifted, is in no way, shape, or form like me- I have NO clue what to expect! Fear of the unknown- Cue the gray hair.
Ah fifth grade... chosen to tell a boy that a girl didn't want to go out with him anymore. I ran as fast as I could up to him and yelled "YOU'RE DUMPED!" Or the time I wasn't paying attention and stuck my hand through a glass door... the year of home perms, taper rolled pants, jelly bracelets, begged my parents for Madonna 'Like a Virgin' and was never allowed to have it, on a new campus ready to make my mark, turn on that spotlight because I'm a star! I was no longer in elementary, I was a hot shot middle school kid. On top of the world... Student counsel, choir, gymnastics, you name it. Academics were easy for me... I was in the cool kids club- dress code= jean jackets. I was sharp minded and quick tongued. And I was always in trouble.
Now it's Chloe's turn... My daughter has had a crush on the same boy forever. She is far from athletic. She always seems to be paying attention. She wouldn't change her hair if her life depended on it. She wears a uniform (thank god) because she has no rhyme or reason to her outfits. She would tell me all the reasons why an album with the word 'virgin' in it is inappropriate for her age group. She has very few friends, would rather not be in groups or clubs, especially ones that would shine a spotlight on her, and math and spelling are HARD! Chloe's giftedness is in language. Her vocabulary is out of this world. Chloe in trouble will happen when the earth is flat and the sky is brown. Chloe hates change. The only similarity is that she is going from one campus to another.
Change is good for you. Living in stasis can literally lead to death. It matters not... Chloe hates that her whole schooling world is now upside down. This is the first year she will have a lunchroom. Hot lunch. Oh yes. School starts earlier in the morning now too. There will no longer be assemblies every Friday. Expectations are different. Playground is different. The secretaries are different. The principal is different. Drop off and pick up are different. It's like Michael Keaton in Mr. Mom going the wrong way at drop off time. And there are big kids there too! I'm getting sympathy acne and an urge to taper roll my pants and wear my hair in a side ponytail.
Since we've been at the same school for all of my daughters schooling career you'd think that we'd have a lovely group of friends to bounce our fears off, to hold our hands, and to reassure us that it will all be fine. Sadly, last summer I had a falling out with my circle of friends. I honestly don't know what happened, and I really don't care. My point is that since I lost the grown-ups, Chloe lost the kids. We are entering the big, scary unknown alone. Or are we? I have one amazing pal, and she has been there with me through it all. We've laughed and cried, gone on random outings, and shared some great moments. We spent every Friday together and had snowball fights, decided to wear mustaches just because, or just hung out while the kids did whatever. She has 3 kids. They are Chloe's best friends, confidants, and kindred spirits. I am forever grateful to have such an amazing woman and family in my life. She knows just how to talk to me, set me straight, point out my flaws, and my moments of triumph as only a friend can.
Wouldn't you know it- she just moved across the ocean. My best friend... and my daughter's best buddies gone *sigh*. It's been very lonely since they've left. I miss my friend enormously. I hate not having her around to mock and make snide comments, and to call my bluffs. She was my partner in crime to take the bounce out of the teachers curls and to smear that lipstick.
Since their move it has been a big growing up period for us as mother/daughter. She looks to me and follows my example. Good or bad, it's what she sees and copies that. I am so very sad about my friend and her family moving but Chloe needs to see that life goes on. More importantly she needs to see that it doesn't mean that we've forgotten them. So we started a care package and add to it until it's ready mail; we made a goal to save enough to go visit them (yes, a vacation that isn't in the bathroom!); Chloe is learning that about living in another country and what the culture is like from her friends perspective. Thank God for Facebook Messenger and FaceTime too!
Chloe also sees that I ask questions. Lots of questions. I went to the school and asked how lunch works, how Friday's work, how drop off and pick up work, the curriculum, and whatnot. I got all the answers I needed so now I am in a much calmer place. The creepy dark abyss of the unknown seems much more reasonable now that we've turned the light on. Chloe too is in a better place. Fear of the unknown is a very real, very stressful thing. Since the middle school beast has been tamed, all I have left to fear is Dayton, Ohio.
15 days. Surgery is scheduled in 15 days. I still cannot believe that I have to fly across the country to get surgery that my insurance won't cover. The closer I get the weirder my dreams get. My brain is screaming. I can read all I want, ask as many questions as I can, talk to the Doctor doing the surgery every day, and it's still unknown. I've never had this done and therefore, it is unknown. I honestly don't know what I'm afraid of at this point. I'm just afraid. I guess that's not 100% true. I'm afraid it will hurt, I'm afraid it will launch other problems, I'm afraid it won't work, I'm afraid I'll need it done again, I'm afraid to fly afterwards, I'm afraid of all the normal things...
I'm glad my mom is joining me. She is a voracious fighter and will be the most amazing advocate and care taker known to all mankind. She has already started doing things here to make sure that I can rest and relax there. She's incredible. My friend that moved overseas has also been an enormous help. Not only was her donation incredible (absolutely floored me) but the thing that really got me was when she said she's not ready to lose me. She's thousands of miles away yet very much here, holding my hand, listening to my fears, reassuring me that it will all be okay.
The incredible outpouring of support from friends, family, and perfect strangers has bolstered up the confidence and let me know that I am in no way alone. While I might have lost people I thought were my friends, the one that really mattered was there. While I thought I was alone, you've all reached out and said 'we love you and we want to help you'. While I will travel out there with what-if's and fears, I will have the most amazing person by my side, holding my hand and helping me through those what-if's and fears.
15 days. Who else can pinpoint exactly when their life will drastically change for the better? Regaining my life in 15 days.
I was in Mrs. Buchholtz's 5th grade class. She had bouncy reddish curls, wore red lipstick, dressed like she had money, and had the attitude that she wanted to be there...Naturally, I did my best to change all that. I was, in the nicest terms possible, an asshole. My poor mom was 'blessed' with 2 gifted kids. No one ever talks about the behavioral components of gifted kids. Let's just say that she had early onset of gray hair with all the challenges she endured from those 'gifts'. Since my daughter, though gifted, is in no way, shape, or form like me- I have NO clue what to expect! Fear of the unknown- Cue the gray hair.
Ah fifth grade... chosen to tell a boy that a girl didn't want to go out with him anymore. I ran as fast as I could up to him and yelled "YOU'RE DUMPED!" Or the time I wasn't paying attention and stuck my hand through a glass door... the year of home perms, taper rolled pants, jelly bracelets, begged my parents for Madonna 'Like a Virgin' and was never allowed to have it, on a new campus ready to make my mark, turn on that spotlight because I'm a star! I was no longer in elementary, I was a hot shot middle school kid. On top of the world... Student counsel, choir, gymnastics, you name it. Academics were easy for me... I was in the cool kids club- dress code= jean jackets. I was sharp minded and quick tongued. And I was always in trouble.
Now it's Chloe's turn... My daughter has had a crush on the same boy forever. She is far from athletic. She always seems to be paying attention. She wouldn't change her hair if her life depended on it. She wears a uniform (thank god) because she has no rhyme or reason to her outfits. She would tell me all the reasons why an album with the word 'virgin' in it is inappropriate for her age group. She has very few friends, would rather not be in groups or clubs, especially ones that would shine a spotlight on her, and math and spelling are HARD! Chloe's giftedness is in language. Her vocabulary is out of this world. Chloe in trouble will happen when the earth is flat and the sky is brown. Chloe hates change. The only similarity is that she is going from one campus to another.
Change is good for you. Living in stasis can literally lead to death. It matters not... Chloe hates that her whole schooling world is now upside down. This is the first year she will have a lunchroom. Hot lunch. Oh yes. School starts earlier in the morning now too. There will no longer be assemblies every Friday. Expectations are different. Playground is different. The secretaries are different. The principal is different. Drop off and pick up are different. It's like Michael Keaton in Mr. Mom going the wrong way at drop off time. And there are big kids there too! I'm getting sympathy acne and an urge to taper roll my pants and wear my hair in a side ponytail.
Since we've been at the same school for all of my daughters schooling career you'd think that we'd have a lovely group of friends to bounce our fears off, to hold our hands, and to reassure us that it will all be fine. Sadly, last summer I had a falling out with my circle of friends. I honestly don't know what happened, and I really don't care. My point is that since I lost the grown-ups, Chloe lost the kids. We are entering the big, scary unknown alone. Or are we? I have one amazing pal, and she has been there with me through it all. We've laughed and cried, gone on random outings, and shared some great moments. We spent every Friday together and had snowball fights, decided to wear mustaches just because, or just hung out while the kids did whatever. She has 3 kids. They are Chloe's best friends, confidants, and kindred spirits. I am forever grateful to have such an amazing woman and family in my life. She knows just how to talk to me, set me straight, point out my flaws, and my moments of triumph as only a friend can.
Wouldn't you know it- she just moved across the ocean. My best friend... and my daughter's best buddies gone *sigh*. It's been very lonely since they've left. I miss my friend enormously. I hate not having her around to mock and make snide comments, and to call my bluffs. She was my partner in crime to take the bounce out of the teachers curls and to smear that lipstick.
Since their move it has been a big growing up period for us as mother/daughter. She looks to me and follows my example. Good or bad, it's what she sees and copies that. I am so very sad about my friend and her family moving but Chloe needs to see that life goes on. More importantly she needs to see that it doesn't mean that we've forgotten them. So we started a care package and add to it until it's ready mail; we made a goal to save enough to go visit them (yes, a vacation that isn't in the bathroom!); Chloe is learning that about living in another country and what the culture is like from her friends perspective. Thank God for Facebook Messenger and FaceTime too!
Chloe also sees that I ask questions. Lots of questions. I went to the school and asked how lunch works, how Friday's work, how drop off and pick up work, the curriculum, and whatnot. I got all the answers I needed so now I am in a much calmer place. The creepy dark abyss of the unknown seems much more reasonable now that we've turned the light on. Chloe too is in a better place. Fear of the unknown is a very real, very stressful thing. Since the middle school beast has been tamed, all I have left to fear is Dayton, Ohio.
15 days. Surgery is scheduled in 15 days. I still cannot believe that I have to fly across the country to get surgery that my insurance won't cover. The closer I get the weirder my dreams get. My brain is screaming. I can read all I want, ask as many questions as I can, talk to the Doctor doing the surgery every day, and it's still unknown. I've never had this done and therefore, it is unknown. I honestly don't know what I'm afraid of at this point. I'm just afraid. I guess that's not 100% true. I'm afraid it will hurt, I'm afraid it will launch other problems, I'm afraid it won't work, I'm afraid I'll need it done again, I'm afraid to fly afterwards, I'm afraid of all the normal things...
I'm glad my mom is joining me. She is a voracious fighter and will be the most amazing advocate and care taker known to all mankind. She has already started doing things here to make sure that I can rest and relax there. She's incredible. My friend that moved overseas has also been an enormous help. Not only was her donation incredible (absolutely floored me) but the thing that really got me was when she said she's not ready to lose me. She's thousands of miles away yet very much here, holding my hand, listening to my fears, reassuring me that it will all be okay.
The incredible outpouring of support from friends, family, and perfect strangers has bolstered up the confidence and let me know that I am in no way alone. While I might have lost people I thought were my friends, the one that really mattered was there. While I thought I was alone, you've all reached out and said 'we love you and we want to help you'. While I will travel out there with what-if's and fears, I will have the most amazing person by my side, holding my hand and helping me through those what-if's and fears.
15 days. Who else can pinpoint exactly when their life will drastically change for the better? Regaining my life in 15 days.
Thursday, August 16, 2012
Sh*t bucket incoming!
Six years ago my dad was on a ladder. The ladder broke. He had a massive brain injury. He wasn't supposed to live. He wasn't supposed to breathe on his own. He wasn't supposed to eat. He wasn't supposed to talk. He wasn't supposed to walk. Yet he does all those things. He took his sweet time, but he did them all, one by one.
During that so called 'sweet' time the rest of us had a different idea of what to call it. It was my mom who came up with our term. Exhausted, scared, no control of the situation, fighting to help save her husbands life, she spat out "I have a shit bucket looming over my house" and it has been a staple ever since. A very dear friend of mine actually designed shit bucket shirts for all of us. I wear mine with pride to this day (love you Sue!).
My friends know I swear like a sailor. My mom, a tiny ball of energy, always seeking deeper understanding and meaning, always looking for the positive, continuously seeing the good in others, and a fierce advocate for her friends, family, and for those in need, is not a sailor. So for her to say 'shit' makes me do two things. One- I take notice and two- I giggle.
Today the shit bucket is hanging out over my house. Fortunately, it's not a stationary bucket. It travels around from house to house, spends time there making a mess of things, then leaves once you're covered in, well, shit. Here is how I ended up the lucky recipient:
I went to my doctor yesterday because I've been feeling like (you guessed it) shit. When I walked in he was on the phone with the doctor that will be doing the surgery that will give me my life back. My primary doc is totally on board, got me set up with what I need, reassured me that he thinks that I am in good hands. Then he told me I have walking pneumonia. Ahhhhh.... there's the edge of the bucket making it's way over my house... I can feel it's cold metal presence, suddenly there seems to be more flies buzzing around, can anyone else smell that or is it just me?
I'm allergic to pretty much any and all medicine that can kill bacteria and kill pain. I have both going on right now. I can take Vicodin, but thanks to some jackass in Florida that stole a prescription pad and wrote thousands of scripts for Vicodin, there is now a national shortage... boy that bucket sure is getting bigger isn't it?
The antibiotic I'm on is about the size of a watermelon. Take 1 pill 374 times a day for the next 83 days and I'll be cured! Remember I'm weird with medicine (assuming you read that blog.) Antibiotics are no different. I need multiple doses to actually get rid of the crap I catch. The side effects of this stuff is fabulous! One of which is, if you are catching on you can guess, giving you the shits! Is that the handle of the bucket coming in to view?
There are feral cats in my neighborhood and we feed them. My neighbor is a colony manager with the city. I love these little guys! Breaks my heart. Well last night one of them showed us that he is really quite the lover and was just a bit shy. So we brought him in, and we will socialize him, and give him love, and the chance for a long and happy life. Awwww, isn't that cute. 3:30 am-7:30 am- MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW, repeat. This at 739 billion decibels. Have I mentioned I have a terribly hard time sleeping as it is? Yep, there's the handle, looks like the shit bucket might be taking up shop for a bit...
What finally solidified the bucket taking up camp over our house was a phone call I got from my positive, good in everyone, silver lining finding, ball of energy mom. She said "Help the Needy cannot designate funds to you. People can't claim a tax deduction to a charity when the money was going to a private individual." Drop F-bomb here---------> "They have to send all of your donations back." Another F-Bomb here-------> The great thing about Help the Needy was the tax deduction and the anonymity. Now they would have to out themselves and wouldn't get the deduction. And I'm out $1,000 of much needed funding.
So it looks like I'm eyeball deep in the bucket. I have flies buzzing around, walking pneumonia, a headache that won't quit, and I lost 1K of my funds. I am not even half way to what I need and I'm scheduled for surgery in 3 weeks. If anyone has a giant crane I can borrow to move this shit bucket please send it over. Otherwise, I'm accepting any and all miracles, and donations.
During that so called 'sweet' time the rest of us had a different idea of what to call it. It was my mom who came up with our term. Exhausted, scared, no control of the situation, fighting to help save her husbands life, she spat out "I have a shit bucket looming over my house" and it has been a staple ever since. A very dear friend of mine actually designed shit bucket shirts for all of us. I wear mine with pride to this day (love you Sue!).
My friends know I swear like a sailor. My mom, a tiny ball of energy, always seeking deeper understanding and meaning, always looking for the positive, continuously seeing the good in others, and a fierce advocate for her friends, family, and for those in need, is not a sailor. So for her to say 'shit' makes me do two things. One- I take notice and two- I giggle.
Today the shit bucket is hanging out over my house. Fortunately, it's not a stationary bucket. It travels around from house to house, spends time there making a mess of things, then leaves once you're covered in, well, shit. Here is how I ended up the lucky recipient:
I went to my doctor yesterday because I've been feeling like (you guessed it) shit. When I walked in he was on the phone with the doctor that will be doing the surgery that will give me my life back. My primary doc is totally on board, got me set up with what I need, reassured me that he thinks that I am in good hands. Then he told me I have walking pneumonia. Ahhhhh.... there's the edge of the bucket making it's way over my house... I can feel it's cold metal presence, suddenly there seems to be more flies buzzing around, can anyone else smell that or is it just me?
I'm allergic to pretty much any and all medicine that can kill bacteria and kill pain. I have both going on right now. I can take Vicodin, but thanks to some jackass in Florida that stole a prescription pad and wrote thousands of scripts for Vicodin, there is now a national shortage... boy that bucket sure is getting bigger isn't it?
The antibiotic I'm on is about the size of a watermelon. Take 1 pill 374 times a day for the next 83 days and I'll be cured! Remember I'm weird with medicine (assuming you read that blog.) Antibiotics are no different. I need multiple doses to actually get rid of the crap I catch. The side effects of this stuff is fabulous! One of which is, if you are catching on you can guess, giving you the shits! Is that the handle of the bucket coming in to view?
There are feral cats in my neighborhood and we feed them. My neighbor is a colony manager with the city. I love these little guys! Breaks my heart. Well last night one of them showed us that he is really quite the lover and was just a bit shy. So we brought him in, and we will socialize him, and give him love, and the chance for a long and happy life. Awwww, isn't that cute. 3:30 am-7:30 am- MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW, repeat. This at 739 billion decibels. Have I mentioned I have a terribly hard time sleeping as it is? Yep, there's the handle, looks like the shit bucket might be taking up shop for a bit...
What finally solidified the bucket taking up camp over our house was a phone call I got from my positive, good in everyone, silver lining finding, ball of energy mom. She said "Help the Needy cannot designate funds to you. People can't claim a tax deduction to a charity when the money was going to a private individual." Drop F-bomb here---------> "They have to send all of your donations back." Another F-Bomb here-------> The great thing about Help the Needy was the tax deduction and the anonymity. Now they would have to out themselves and wouldn't get the deduction. And I'm out $1,000 of much needed funding.
So it looks like I'm eyeball deep in the bucket. I have flies buzzing around, walking pneumonia, a headache that won't quit, and I lost 1K of my funds. I am not even half way to what I need and I'm scheduled for surgery in 3 weeks. If anyone has a giant crane I can borrow to move this shit bucket please send it over. Otherwise, I'm accepting any and all miracles, and donations.
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