Journal?

Just Purchased these on Ebay. Very excited. I have wanted Trumpet Flower beads for a long time now. :D

I am tired so I am going to make this quick:

My appeal for an extension of IV Rocephin got denied today.

Emblem Health says there is no evidence that I have Lyme Disease because the IgeneX test is not credible. (in a nutshell)

I didn't know I could be cured so fast! I am so excited!

.....

This is what I was expecting to hear from them, but they just put it so bluntly I wasn't expecting it to be written in this way.

I can appeal again but it costs $50. *eye roll*

I have sent letters to My senator, the Capitol, etc etc. This appeal letter will also be sent to those sources as well. I know this will never get covered and I have been paying out of pocket since they refused extension. To be honest I don't care about the expense anymore — I just wanted to share this tidbit of awesomeness.

I am going to go snark myself to sleep.

<3

Amanda

I seem to have the worst of luck when it comes to 50/50 chances. There is usually one favorable, and one unfavorable outcome. It's not like the chance is: "You will either get Chocolate or Vanilla Ice Cream." The choice is usually something like: You will win 1,000,000, or you will owe us 1,000,000 dollars.

When it comes to 50/50 chances I always get the shit end of the stick. I don't know if maybe probability just isn't on my side, or if I am just unlucky. Perhaps if I get the "bad" 50% for the rest of my life, a one time *huge & awesome* 50% is waiting to spring on me. Karma? Probability? Fate? Fuck knows.

If I have to guess between walking left and right and the correct way is right — I always walk left.
If I have to schedule a BBQ for Saturday or Sunday, and it rains Sunday, you will be damn sure that the BBQ will be on Sunday.
If I have to *guess* *ever* — I am always wrong. And it seems to *always* be a 50/50 chance.

Now what is my point? Today I get a call from my doctors office. They never call *me* so I knew something was up. I thought, oh perhaps they are calling because they haven't given me a blood test for 6 weeks and I have been on IV medication? Nah. They were calling to cancel my appointment for June 24th because my doctor will be on vacation. Now this is fine to me, I understand and I am not too peeved. The problem is that the nurse that called me had an attitude from minute one of the conversation. There are two nurses in that office — One is very understanding, patient, etc. The other just is not. I was probably the 10th person she had to call to cancel and she was probably just pissed — but to be quite frank that is not how I want to start my day.

So ok —Just reschedule me right? Oh well there are no openings apparently so I will have to wait till the end of July or see the P.A. instead who "Can do everything the doctor does". Once again, this isn't that big of a deal in any other situation but mine. This is my second appointment. The second appointment is where you assess everything that you did and said on your first appointment. I am on IV medication and I have a co infection which I am currently not treating for. I also never met the P.A. on my *FIRST * appointment, so I don't feel comfortable having my *SECOND* appointment with her. I have lots of things to talk about and I want to talk to the doctor. Apparently, this seemed like a ridiculous request to the nurse. She kept interrupting me by saying:

Amanda: moes?

Justin: oh shit, i forgot it was monday!

//

Moes Mondays Fail.

<3

Sean:
ya money sucks, i wish i could barder things

Amanda:
like your dick?

Sean:
no one wants tht silly

---

Danny:
oh so true.
he could use it as a bartering tool in like, "i won't touch you with my dick if you do ______ for me."

i have this really funny mental picture of sean chasing lee kessler around with his dick.

---

Sean:
hahahahhaha
omg
im going to do it

Let me just start this entry by saying a few things.

1. Fuck the show The Doctors.
2. Fuck the host of The Doctors. Just because you are good looking doesn't mean you know what you are talking about.
3. Fuck the CDC.

So with that said - My grandmother taped The Doctors today for me because she said they had a short segment about Lyme Disease. I knew it would be a disaster but I watched anyway.

The segment comes on and they said some beneficial true statements about ticks and rashes. Normal stuff. Whatever. But there were *tons* of uneducated false statements. Basically all their statements seemed like they came straight from a CDC convention power point presentation.

They stated that 80% of people get the rash — more like 40%

The main "doctor" said that the tick transmits Borrelia Burgdorferi....except he said "Borel-li-ia....Burg...dor...furi? Wow thats a mouthful!" It is pronounced Bore-el-ee-ah Burg-dor-feri. You are a DOCTOR (or so you call yourself). Get it right.

They then had the audacity to bring on someone for the CDC to talk for about 30 seconds about Lyme. He stated that once you get the rash 14-21 days of oral antibiotics are taken. Ok fine. Then he stated that if symptoms persist you need an additional 4 weeks. FALSE. It is SO much longer than that.

Maybe these doctors should talk to people who have lost loved ones to this disease. Maybe these doctors should take a look at our brains and see all the damage that has been done. Maybe these doctors should talk to people who's insurance companies stop giving a crap after 4 weeks of antibiotics because of your god forsaken false, skewed CDC guidelines. This disease is ruining people physically, emotionally, financially, and in many other ways — all because of the CDC and the IDSA's huge ego trip.

I am upset by Lyme being talked about on these daytime TV shows and after seeing this I am REALLY afraid of having an Oprah show about Lyme. The IDSA and the CDC are getting in there first with their nonsense because they know we can't even get a chance to show our side. Its like they know we are planning on it.

They are all being paid off to spew this nonsense. The guidelines aren't being changed for two reasons. MONEY and EGO — End of story.

Give me my life back and stop lying to America, to med students, and to the rest of the world where Lyme supposedly "doesnt exist".

I want to strangle someone with my IV tubing right about now, and then shove the IV pole up their ass until it latches on to some type of soul or conscience.

This could have been written much more eloquently, but I am just too mad to care.
Such Idiots.

I was listening to Fresh Air and they were speaking about the ethical ways to heal the American medical system. Here is an interesting quote about healthcare by a former ER physician:

So — I recently wrote the following statement on twitter.com:
Waiting. Waiting. Waiting. Researching Probiotics. Waiting. Waiting. Waiting. Phone call? Oh wait no. Waiting. Waiting. Waiting.

About 5 minutes later, I got an email saying: Culturelle Probiotic (Culturelle) is now following your updates on Twitter.

How interesting. :P

http://www.peoplewhositinthedisabilityseatswhenimstandingonmycrutches.com/

Great Photoblog & Longest URL ever.

You can now shop at www.amandamorante.com.

I have set up a bigcartel account.

I have been doing some more crafting and decoupaging and figured I could sell most of it! Everything is still 'coming soon,' but it will be for sale soon.

Maybe I will sell some stuff, maybe I wont. Either way — I have a store up and running and I have something to occupy my time.

All proceeds go to my Lyme treatment.

Yay.

I am addicted to these crackers:



Love these so much! I have been dipping them in hummus all week.
Such Gluten Free goodness.

Check out more here: www.marysgonecrackers.com/ns/intro.php

Paul:
I had the weirdest dream last night
And you were in it lol

Amanda:
what was it?

Paul:
We were on the outskirts of some city
And we were driving to it
And you were driving
But the road
They repainted all the lines on the road
But they didn't get rid of the old ones very well
So you couldn't tell where the lanes were lol
And all the other cars were honking at us and stuff
As if we were the only ones who didn't know
Then we got to the city
And I had no shoes
And I didn't want to walk around the city with no shoes
So we were trying to find a converse store lol

Amanda:
lol
wtf

Paul:
But then we got caught up in a fake pizza thing

Amanda:
a fake pizza thing?

Paul:
And were throwing fake cheese and stuff at each other
Yeah we pretended to be delivery people
And we started a debate
Dems vs Reps
lol
And the winner got real pizza

I am somewhat new to this whole Gluten Free thing. Previously, I was only gluten restricted. Now I am 100% as per doctors orders.

With this being said: I bought some Vitasoy soymilk today and brought it home. I never thought soymilk would have any gluten ingredients in it so I thought nothing of it. I checked the label — just randomly — and it has barley in it.

"Just a Hint of Barley."

I would love to know what "Just a Hint of Barley" does for soymilk. I bet you can't even taste it.

How dumb.

For those of you who don't want to read this entire blog post: I am going on IV Rocephin and holding off on almost all oral medications and supplements until my stomach and gluten allergies are under control.

With that said: I walked into this appointment thinking that I was a 'somewhat' normal case of Lyme. I also walked in thinking I have had Lyme for 7 years. Boy was I wrong. My case couldn't be any further from normal and I have definitely had this disease since I am a child.

I brought up my pill swallowing issue right away. He stated that this would obviously be a struggle and we began talking about why I might have this issue. The possible answer — cranial nerve damage from Lyme Disease. Forever people have told me that my swallowing problems are all in my head and that I was just "scared" to swallow a pill. We talked about how I had them when I was a child and how I had episodes of not eating because of throat and swallowing issues. This and many other childhood symptoms brought us to the conclusion that 7 years is not a proper estimate for how long I have had this disease. We feel that I have had it since I was at least about 7 years old and that my Mono at 16 probably made everything go haywire.

Since seeing Doctor Enlander for CFS/Fibro I have had knowledge of a Gluten Allergy. I did not realize the extent of this allergy until today. Doctor Raxlen is basically keeping me off almost all oral medications and supplements because my stomach will not absorb them correctly. He said that until my stomach issues and my gluten allergy are under control I can not really take oral medications and notice any benefit. In fact, they will just make me sicker. This is probably why my previous bout with oral medications was so poor. As of today I am 100% Gluten Free.

For a starting treatment I am being put on IV Rocephin. They must call my insurance company and work everything out but I will most ikely have a PICC line inserted within the next two weeks. More medications will be added to the cocktail once we know what co-infections I have. My symptoms are so spread out that even he can't guess which ones I might have. We did the muscle testing (Applied Kinesiology) and I failed all of the tests — Lyme, Erlichia, Bartonella, and Babesia. This testing is just a theory so we will see what the serology says but it is definitely interesting.

It is agreed upon that I have trauma from all of these years of medical anguish. It is also agreed upon that I have been verbally/mentally abused by many doctors and therapists which has caused my immense stress and trust issues when it comes to the medical field. I am going to be taking Lexapro to calm down my anxiety and depression. I am hoping that this will help me get through the anxiety that comes along with Lyme treatment.

Doctor Raxlen also stated something that is very interesting to me. He said that I have very obviously "adapted" to this disease. I have had it for so long that I was forced, as a survival technique, to adapt in order to live as a normal person. Eating, swallowing, general living — all involved immense amounts of adapting. He also told me that I have grossly overcompensated in my life because of all the things I have accomplished despite this disease. I have to say I agree, but I never really noticed it before. It is really surprising that I graduated Magna Cum Laude in college, traveled Europe, succeeded in life, and basically just lived as a "normal" teenager/child. This truly shows me how strong I really am and I now know that I am ready for whatever this disease wants to throw at me. It is going to be hard, but I know I will handle it.

The prognosis at the end of all of this is that I my Lyme Disease has affected my Brain and Central/Autonomic Nervous system pretty greatly. Most of my issues probably stem from cranial nerve damage in which case I am a strong candidate for the intravenous antibiotics. I hope that the next few weeks prove positive for me regarding insurance and cost, but we can only take things one day at a time.

I never realized two hours with a Doctor could make me feel so confident about this.

There was much more talked about and I will add things as I remember them. I hope everyone is feeling well and that you are taking each day with stride! Thank you to everyone who has been praying for me and giving me support and guidance. You have no idea how much it means to me.

On to Tomorrow!
To Life and to health!

For the past 4 years I have lived on my own. I have had my own space. I have always been able to have my room organized the way I wanted. I was able to have my room be a creative and inspiring place. I always thrived in my room.

When I first returned from England I was under the impression that my Lyme Disease would be under control rather quickly and I would be moving out by the summer. I would be on a good treatment plan and I would be able to live my life. Now, almost 5 months later, it seems that I could be stuck in Plainview for at least another year. If I go broke from medical bills it could be *a lot* longer than that.

I understand that these were the cards that I was dealt, and that I need to be here to get healthy again. I also fully, 100%, appreciate that I even have this opportunity. However — I don't feel like I have a place at all. I am living in my parents upstairs "den/family room." While it is a nice sized room with a nice sized television and closet within it — I have nothing in this room that says I live here. The only visible remnants of myself are a sketchbook lying next to my bed, my computer, and my medication (how depressing). Then I have clothes hidden away in a closet and in various nooks. I have no real way to organize anything and my belongings are thrown around the furniture and other various items that were already in the room when I arrived. Not to mention *most* of the things that I would live with on a daily basis for inspiration are in boxes in the basement.

I feel disorganized and disconnected from the place that I am supposed to be healing and living for the next 1-2 years. I don't feel creative and I don't feel comfortable. I look around the room and all I see are photos of the New York Mets, Shea Stadium, Ski Resorts, Golf Balls, Baseballs, and Cars. There is nothing in here that I can look at — besides the photo of me and Bryan — that I can say is truly mine or something I truly care about.

When the house was redone in 2004, my old room was given to my brother and the new room was turned into a den because I was moving out at the time of the renovation. This left me no place to come back home to. However, I didn't know that I would *EVER* be retuning for such a long period of time.

Since this is a "Den/Family room" people treat it like a family room. Certain people come up here and clean it like it is a den. They try and make it *look* like a den. Well right now it isn't a den, it is where I am living and trying to stay remotely sane. I don't appreciate having people come into my living space and moving my things around to their liking. I keep losing things that I would normally find quite quickly and I don't even have that much in the room to begin with. My grandmother would disagree because apparently I have *TONS* of things in this room. Perhaps it wouldn't look so cluttered if I was able to make the space my own. Half the things that are important to me aren't even in this room, they are in boxes in the basement. I don't have a lot in this room — Point. Blank. Period.

In this room is a big chair I don't need, 3 lamps, a bookcase full of shit that isn't mine, a huge television with a huge television stand full of shit that isn't mine, a closet with empty boxes which aren't mine, a million photos on the wall which definitely aren't mine.

I am a spacial minimalist. I like to know where my things are so I can find them easily. I don't appreciate people hiding my things to make this room the way they feel it should look. If this is where I am supposed to live, and heal, and possibly sit with an IV for 2-4 hours a day, then I want to feel like I have some say or some place in how I feel in the room.

It's been months since I have had anything to call my own. I feel like everything I am been stripped from me. This room is uncreative, uneventful, and just....not mine. I often wonder why I stay in bed *all* day. Maybe it is because I have nothing eventful or inspirational to wake up for. Everything is just bland.

I can't wait to move on with my life and my health — and when I do — I will never look at another piece of New York Mets memorabilia ever again, and I will definitely never move back to this hell-hole that is Long Island.

Here is a surprisingly relevant excerpt from this weeks "This American Life."

---

Plan B
"This is a short story by the Fiction writer Ron Carlson: In which a guy loses his job after 10 years on the job.

His boss tells him 'Ok, go to plan B.'
And the guy says 'This WAS plan B.'

Which is I think how it goes for most of us. We head off cheerfully towards plan A, and plan A turns out to be completely different form what we thought it would be so we switch to a back up, and then the back up plan becomes our life.

Just this morning I was giving a talk to come people about 100 people there and knowing I would be talking about this on the radio today I asked them to remember back...to when they first hit adulthood. What is it they thought their lives would be like? What was their 'Plan A' back then? And I asked them okay, 'How many of you are still on plan A?' Out of 100 people, only ONE person raised their hand. Just one, the youngest person in the room, just 23 years old. Everyone else was just like: 'Plan B? What about plan C D and F?'"

High School Recap — 2004

I mentioned names in this entry, so sorry if anyone is offended. Lol.

Maybe I should tag those people. Or not.

Before us Americans blame the Government for all of our problems, perhaps we should look at our society first and fix our growing social flaws. I think there is a huge connection between our society and our complete failure as an economic nation.

The wants and "needs" of Americans is what makes our country so ridiculous in the first place. People need to stop chasing The American Dream and start worrying about society as a whole instead of themselves as an individual. Many people just want to be rich, and many people have some ridiculous dream they are trying to reach. You don't need a pool, and a big house, and 3 cars. You don't *need* it. This needy outlook on life and accomplishment creates greed and jealousy within the culture. Also — the people high up on the financial food chain make sure that they use their power and money to maintain their power and money. These are the people in charge of certain things in America that the government should be in charge of.

If Americans could trust the government to run certain aspects of our culture (Health Insurance and Treatment, Federal Reserve, etc) perhaps we wouldn't have people with greedy intentions licking up all the money at our expense in order to maintain their American dream. But we can't trust the government because we are afraid of the government. We should be afraid of ourselves and our society and what we want as a society. Americans need to get their priorities straight.

I don't care about our taxes going up America. If socialization means higher taxes, then more power to the system. I really don't care. Sometimes things need to be socialized and/or maintained by the government. I would rather the government run my health care system, than a bunch of greedy money seekers. I think I trust the Government to run the most important things in my life rather than some John Doe millionaire that only cares about himself.

Happy Inauguration Day everyone. Nothing will change until we change, no matter how hard Obama tries.

And once again, stop complaining about your taxes and let America get something done for a change.

It is hard to believe that it has been almost 5 months since I returned ill from England in September. A lot has changed since then regarding my health and the way I look at the past 6 years of my life.

When I first returned from the UK I could barely walk. I was fatigued more than I ever was before, and it seemed that I was getting sicker and sicker every single second. Since getting diagnosed with Lyme Disease, that first month home back in NY has really focused itself from being a very vague month in my life, to a time that is now very clear. Lyme Disease is what made me able to grasp the last 6 years of my life.

Being sick for so long is really difficult, but it is more difficult when you don't know why or what the cause is. The first few years I thought I was just lingering from Mono, maybe I was just a lazy teenager that liked to sleep!? Who knew. Every year the number became higher and higher and i felt worse and worse. Any answers? Nope. None at all. Oh well, lets go on with life and forget about it. This is what I told myself. Everyone said I was fine, so I must be fine right?

Within these 6 years I have probably been in the emergency room 2-4 times per year. Sometimes within weeks of each other. The first couple times were for the headaches, then for the chest pains, then for the weakness. In the beginning people believed me, they thought something was wrong — tested for it — and then found out that nothing was wrong with me in the "ER" sense of the word. Take some tylenol. See a neurologist perhaps. Go home.

Towards the end of all these hospital visits, and the end of the 6 years I noticed that a lot less care was being taken regarding my symptoms. The more symptoms I had, the more doctors started to think I was a hypochondriac. Too bad Lyme has multiple symptoms which move around the body — but nevermind the facts! Swat the facts away with your filthy hands. The second to last recent time I was in the hospital the doctor told me that I should "Seriously consider seeing a psychiatrist." The last most recent time I was in the hospital, a Psychologist was present during all the doctors rounds. She even was brought in when I would get upset because no one was listening to anything I was saying. I felt like a mute.

Looking back at all of this I have realized that for 6 years I have been told, slowly but surely, that I was mentally unstable and insane. I was told that I was making things up. I seriously began to think, after 6 years of this, that I might actually have mental issues. I've been to psychologists and psychiatrists, I have been put on medication, none of that bologna helped me at all. When I was in therapy I was told that I was "Resisting Therapy." They said this because I really had nothing to talk about. I told them to stop Psychoanalyzing me. I told them that there is no deep rooted childhood trauma that needs to be divulged from my body — I JUST DON'T FEEL HEALTHY. I stopped therapy after my therapist deemed me as resistant. I then weaned myself off of all psychiatric medication on my own and went through intense withdrawl. This was 2-3 years ago.

I knew nothing of what was wrong with me all this time. If all these doctors seem to think I am completely insane, then maybe I am! This was my frame of mind at the time. After I stopped therapies I stopped seeing doctors about my conditions for a very long while. I didn't really complain about my chronic issues until they started to get bad my last year of college which is when Chronic Fatigue came into play — which meant more Doctors. While I was in England and things progressively got worse I saw doctors there that also told me that I was completely healthy, and there was absolutely nothing wrong with me. At this point something clicked in my head and the "I'm insane" thoughts began to come back. "I am insane", I thought.....I might really be mentally unstable.

The point I am trying to reach here is that I am finally realizing, after all these years, that I have been mentally abused by my doctors, by my hospitals, by my therapists, and by the medical system. My experience is nothing but a story of abuse. I had a relationship with my doctors and they were ignoring me and demeaning me. This would be called abuse in any other scenario, but because it is a medical institution it's ok? Because you have a PhD its ok? This might sound harsh, but it is what I believe. There may have not been animosity behind what was done to me for so long, during what was supposed to be the most care-free years of my life, but it was still mental and verbal abuse. No one listened to me. No one listened to me because I was a 16-20 year old girl in the hospital who seemed like she was 'complaining.' I have a "great life" so what is there to complain about? Maybe I should just suck it up and live the rest of my life in pain. People always ask the question: "If a tree falls in the woods and no one hears it, does it make a sound?" Well i was treated with this alternative mindset instead: "If a person aches and no one believes it or recognizes it, does it exist?

Now that I know that I have Lyme Disease my entire life has changed. I'm going through the normal grieving process anyone would go through when diagnosed with a disease. However, I am coming to terms with the fact that the state I was in when I returned home from England exists partially due to trauma from medical abuse. Yes I was sick, Yes I was tired, Yes it was hard to walk, but I could still exist — my mind just wouldn't let me. I am no longer recovering from just Lyme, I need to learn to trust doctors and hospitals again.

I now know that I am not insane and I hope that one day a doctor reads this and realizes the situation me and so many others are thrown into. I can not believe I went through so many years of abuse without even realizing it.

Today is the day to no longer feel like a fool. Today is the day to accept my disease, accept my past, and move on.

This is my time. This is my life. This is my realization.

I have been involved in a Lyme Disease Chat room/Support room for a couple of months now. My Birthday is tomorrow and one of the men in the room recorded a birthday song for me! Within our room, he is known for being musical. You can hear it below. It is the first song on the list.

The past couple months have really shown me how important support really is. I am lucky to have found this particular online community.

It really sucks that I am going to be feeling flu-ish for my birthday. I was really hoping that this years Birthday would be better than last year. Hopefully I will be feeling better before Saturday since I am planning a birthday gathering with Friends :)

There isn't *too* much to update on but here is an update of the last few weeks in [Categories].

[Heath] — My Lyme is not being treated with polytherapy at the moment because I am scheduled for a tonsillectomy and my doctor doesn't want to complicate things before the surgery. Also — he feels that many of my symptoms are have a strong viral component and he wants to see what type of relief I will get after the tonsils/adenoids are removed. After the surgery I will hopefully start on some sort of polytherapy in February. I also need to assess the possibilities of Mycoplasma and Babesia as Co-infections of my Chronic Lyme Infection.


[A Little Consideration Please?!] — I still haven't gotten used to living/working in NYC and having the need to be slower than the normal New Yorker. Today I got basically pushed down the stairs at the A/C/E —> L Transfer. I fell on the floor at the last step because everyone behind me was pushing and I couldn't keep my balance. I fell right on my knee and it finally stopped throbbing a few hours ago. It is becoming fairly difficult for me to exist as a 23 year old who is sick because no one looks as me as needing any sort of assistance or *consideration* when it comes to me being a bit slower. I wish people would treat all people with the consideration of personal space and pace — Then no one would have to worry about who needs it or not. Is that so much to ask my fellow human beings?

[Holidays] — Tomorrow I am heading to Connecticut in the morning/afternoon for our yearly xmas eve extravaganza. Then in the morning I am flying into Tampa to stay with my aunt. We are going to be about 5 million people in one house so it should be really interesting and fun. Regarding the holiday season in general: I am excited to give my gifts this year. I think I did a fairly good job given my circumstances/limitations. I am glad that I did not settle on getting a gift card for *anyone.* Also — New Years I will be rocking out with Valerie. I am also trying to plan something kick-ass for my Birthday (Jan 6). Any suggestions?

[Design] — Last month one of my projects from LCC got published in a German Magazine. It was very flattering and a great compliment and honor. I wrote an entry about it with photos/video here I am also currently working at Curio Design We are working on some great stuff and it's the perfect Design environment for me!

[Boots!] — I finally found the perfect boots! I got them at shoemania for 50% off. You can see them here They are Comfortable and SANS heels — the perfect mix.

I'm sure there is much more but I have to finish packing for Florida. I am sure there will be an end-of-year update along the line somewhere.

Have a wonderful Holiday All!