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Amy's Emergency Medical Fund

$14,130 of $30,000 goal

Raised by 385 people in 4 months
Dear Friends & Family,

I have always had a hard time asking for any kind of help, but here I am after swallowing my pride because I am dead broke and can no longer pay for my own medical care. Admitting that I can't do this alone makes it harder.

Full Disclosure:

In November 2016 I was diagnosed with a very rare cranial nerve disorder - Sluder's Neuralgia/Trigeminal Neuralgia along with a slew of other related diagnoses (chronic status migranosis, chronic myalgia, PTSD, Autoimmune disease, inflammatory bowel disease, tinnitus, Celiac's Disease, occipital neuralgia and so on) that have taken over my entire life.

In short, I am in pain all day, every day with no real solution yet. I just spent Christmas in the hospital, while my team of doctors and specialists tried to break a 6 week full body migraine. I basically can not function as a normal adult. My quality of life is null and void. I miss my friends, family, and my career. I spend most of my days in a dark room trying to escape the pain.

I applied for social security disability and was denied.

I lost my full-time job that I loved over a year ago due to my illness and because I was "mutually terminated" I do not qualify for unemployment.

I have had almost zero income for over a year and have finally depleted every other monetary resource I had.

My doctors (some of the best in the state) now want to send me to Mayo Clinic in Minnesotta as a complex medical case to get the best diagnostics, testing, treatments, and care that I can, because I have exhausted my treatment options at my local hospital, Thomas Jefferson Hospital and UPENN Hospital. 

However, I can not readily afford this. 

Your gracious donation will help me pay for:

Mayo Clinic, travel expenses for myself and my parents (who are my primary caretakers), surgery (which I was just told I needed again this past Monday) various ongoing and new treatments, medications, supplements, medical devices for at-home use, medical tests, physical therapy, hospital stays, and any other medical- related expense.



Your contribution will also help me hire an attorney so I can hopefully get disability or financial assistance. Even If I do get approved for disability, the wait time for any type of payout is 24 months.

The truth is that I am scared, nervous, and mostly sad. I have been trying very hard to stay positive, keep my head up, and not spiral into complete depression. In fact, having to start this fund is extremely hard for me, but desperate times call for desperate measures. 

Honestly, I just want my life back. I miss being able to enjoy the things I love, being able to sit in a movie theater, socializing with friends, driving, my career as an entertainment writer - just everyday things that I can't do now that I used to take for granted. I need some sort of sign that there is a light at the end of this seemingly never-ending tunnel. I am struggling big time here, but I refuse to give up or give in.

Even the smallest donation or a simple share on social media will be so greatly appreciated by myself and my family. 

I can't thank you enough.

- Amy Giardiniere

If you have any questions at all, please reach out to me.
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Remember how my last update said how I was going to start advocating for those with invisible illnesses?

This is why: (thank you again for reading and your support.)

This is going to be a long one, but I think it's important to share concerning the current state of our healthcare system - and this is only the beginning of my advocacy for patients with "invisible illness."

Yesterday the worst thing ever happened to me in a hospital or even a doctors office setting - and trust I have had a lot of disrespectful things said and done to me while in the ER, doc offices, and hospitals in well my entire life.
First let me say, I have wonderful, compassionate practitioners that see treat me at my Neurology office - since this whole medical mess began.

My primary care physician is an actual God-send.

We all know that my situation is very complex and mysterious. My nuero and PCP direct admitted me for pain control and diagnosis of new, strange and even more complex symptoms.

I know this wing of the hospital and am very comfortable here. All of the nurses and tech partners are overly caring and helpful and have gotten me through some of my WORST times, medically and emotionally.

Many specialists were assigned to my case when I got here.

A new neurologist and family (not even nuero) medicine nurse practitioner that I do not know were assigned to me. Neither of these practitioners are migraine or Trigeminal Neuralgia specialists.

The first time they both came to see me, the doctor accused me of drug seeking in a not so subtle way, while standing over me and lecturing. The doc also expressed her negative feelings about medical cannabis, which is basically helping me more than anything else. In short, she did not believe my answers to her questions, and told me there was nothing they could do because I didn't have a migraine and the body pain I described is not nerve pain, but instead a hidden autoimmune disease - so they were passing me off to pain management. Doc was rude, arrogant and spoke to me like a dumb child.

Trust, I know what nerve pain is. And I am in no way an addict or drug seeking. Either of these practitioners would have known this had they read my chart.

So, safe to say I was livid. Mainly because I have worked SO HARD to decrease my pain medication and thanks to medical cannabis, I'm a success story THAT EVEN THE GOVERNORS office is interested in. I was hurt, very hurt.

But I brushed it off. The second time this team came to see me, the nurse (who isn't even qualified to read an MRI) again told me I don't have nerve pain and it's an autoimmune disease, so they are testing me for lupus, ms, HIV etc. I told her I was already tested for anything and everything possible. When I called to ask about WHY an HIV test I subtly learned it was because I could have been exposed. I bluntly asked... you mean to dirty share needles right?

I spoke with other doctors on my team about this experience and expressed my concern about my care being in the hands of this particular neurologist. Especially because the usual protocol to treat me wasn't even started.

First, don't tell me how I feel or that I'm wrong about what pain I have.

The third time the nuero came in, I was finishing up with occupational therapy and an exam. She asked him to have a meeting out in the hallway? What? Why the secret hallway meetings - I AM RIGHT HERE.

At this time I also had a migraine and was in the middle of a pain flare from other practitioners pushing on my neck and back and a the generic neuro exam I had already had that morning.

The nerve pain in my face and head was skyrocketing to OVER a level 10 for the first time in a month. I can thank cannabis for the significant decrease in amount of flares! Yay right?!

The nuero was made aware of the severe flare when she walked in my room.

She told me to move my legs and sit at the edge of the bed. OK hard enough when my arms and legs are in pain.

She proceeds to shine her iPhone light directly into my eyes and laughs while saying 'oh I'm sorry this must hurt."

YES IT DOES!

She continued to push hard on my face, directly on the Trigeminal nerve, my eyebrows, my eyes.

I asked "Can you please STOP that? I have Trigeminal Neuralgia"

She said, " That hurt you?! In the most arrogant way possible. I said yes I have Atypical TN 2. She looked at me and said that doesn't exist. I said yes it does it's in my chart. She proceeded to explain to me in a belittling way what Trigeminal Neuralgia actually is because she's right and I'm wrong and confused.

She went on to roll her eyes and say, "We'll debate that later."

If she was a decent neurologist she would know about the existence of my diagnosis.

She proceeds with the exam after I asked her to stop. She didn't stop.

She snapped her fingers in my ears, "Can you hear that?"

I lost it. ANY doctor ever knows how to properly treat a migraine patient, especially during a pain flare.

I said YOU NEED TO STOP NOW.

Again she questioned why and that snapping shouldn't affect my pain.

"How did me JUST snapping make your face hurt?"

I'm not exactly sure what happened after that. I know I said something about her not knowing a damn thing and not being qualified to treat me or probably anyone else and that's why her patient reviews are horrible. I addressed how arrogant and condescending she is. That no other doctor has ever pushed hard on my face or snapped loudly into my ears. I even SHOWED her how every single other doctor performs a generic nuero exam on me or ANY chronic migraine patient or Trigeminal patient.

I was brutal. But thanks to his horrible doctor and her idiotic "exam" my facial pain flared to over a 10 in about a minute.

Another doc working on my case came in, not knowing what was happening. I was speaking to only him. However, nuero continued to interrupt me, still being arrogant.

"She's just mad because I snapped my finger near her ear."

Again if she looked in my chart and got off he high horse she would see I have Hyperacusis - extreme sound sensitivity, more severe than an average "headache."

Finally I simply pointed at her and said, "You need to leave, now." She looked around the room for help. I said again, LEAVE MY ROOM NOW and do not even try to come back."

She left, but not before pleading that she is sorry she couldn't help me.

She walked out, clearly upset. GOOD!

I explained the situation to the other doctor who was present, he had no idea and apologized on behalf of the entire hospital that I had that experience.

I have never in my life been treated that horrible by a doctor.

And this is why I will fight for anyone else suffering from an invisible illness that has had to deal with hurtful, arrogant, unqualified partitioners.

Because of this incident, I moved backward. I felt BETTER the day I got here!

No one NO ONE should ever feel bad about medications they need or for using medical marijuana.

NO one should ever have to fight so hard for themselves while in a hospital.

No ONE should be told how they do or do not feel by an incompetent doctor.

We are warriors. We know how we feel!

I will continue to be a WARRIOR for anyone else struggling with severe chronic pain, I'm just getting started.

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Unfortunately I am back in the hospital again with new symptoms that started 2 weeks ago. I am in so much pain that my legs and arms are useless at the moment.

The good news is I did get accepted into the Headache/Nerve Disorder Clinic at Thomas Jefferson with one of the best doctors on the east coast. I was hoping I could make it to my appointment in July. I am still not stable enough to travel to Mayo, Jeff is my last option that is somewhat local. It usually takes 6 months to get an appt, but they got me in fairly quickly!

Right now my team of docs is trying to get my pain under control again while trying to figure out what's going on and where these new symptoms came from.

I was doing well using medical cannabis desperately trying to control the pain at home with anything and everything I have at home. Both my nuerologist and PCP direct admitted me again yesterday - I didn't have to go through the ER.

But I was sitting in a room for 6 hours before they even put an IV in or gave me any meds. Among 5 other things that went wrong, I finally cried in pain for the first time in a year. The stigma against "invisible illnesses" HAS TO STOP! Just because I'm not bleeding from the head doesn't mean that my situation isn't an emergency.

As soon as I get out of here, I'm going to advocate hard for those with invisible illnesses. HARD.

I hope this isn't a long stay. Thank you all so much for your kindness, prayers, good vibes, and support. I wouldn't be able to afford half of my treatments, medications, and so on if it weren't for your support.

I think they took enough viles of blood already to make another person!

Yes, I still have my sense of humor and trying to stay strong and keep calm.


Always,
Amy

Last time I had Multiple PORGS from Star Wars on my side - but now the KING OF WAKANDA IS HERE! Black Panther!
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UPDATE!

Dear Friends and Family,

I can NOT believe that all of your generous donations and social media shares have already gotten me halfway to my goal! I am speechless and in awe of your kindness and compassion.

I'm getting a lot of support from the film/tv/entertainment industry. I am amazed at what our community is capable of when we come together and lift each other up instead of...arguing over The Last Jedi or whether or not Three Billboards is Oscar worthy, haha.

But seriously, I love you guys. I am so ready for this medical mess to be over so I can get back to my career! I miss it so very much.

And - this might seem trivial but I'm so upset I can't go see Black Panther at the movie theater. The flashing lights onscreen and noise make my pain much worse.

I'll be honest - the last few weeks have been challenging to say the least. Talking openly about my feelings is a new thing for me, but here we go.

I am sad and scared. I'm trying so hard not to fall into a downward spiral, but lately it's been difficult for me. I've been fighting a severe migraine for over 3 weeks that just REFUSES to break. Not to mention the nerve pain in my face, and...the rest of my body. I'm scared because I have no idea when I'm going to flare, which creates an emergency situation and a lot of anxiety for my family and I.

For example, the other night I was sitting on the couch watching VERSACE with my mom (she loves that show) and out of nowhere the pain level in my head, face, and body escalated to a level 10 within 5 minutes, I was talking but not making any sense. My family knows the drill when this happens and it needs to happen FAST.

Here is the drill when I have a sudden pain flare (which has been every single day for over 3 weeks now, so needless to say my mood and positive outlook are struggling bigtime):

1. Turn off any noise, lights, people eating, kitchen noises.
2. Get the meds and shove them into my mouth = a combo of Percocet, Benadryl, Zofran, Toradol injections, Flexeril, Caffeine, Xanax (to physically calm my entire body) DHE, Migranal, Voltaren Gel (rub it all over my face) CBD muscle balm (rub it all over any muscle spasms), rub Tiger Balm behind my ears.
3. Get the heating pad on my back and around my neck. Also use the heating pad directly on my face - I can't use ICE because it triggers the nerve pain MORE.
4. Eat toast (to help the meds absorb) and drink a lot of water, coconut water, or Arbonne hydration water.
5. Get lavender essential oil lotion on my wrists
6. Massage Magnesium lotion into legs and arms.
7. Sit still (because any movement makes it worse) AND MEDITATE through the pain.
8. Wait for something to kick in - sometimes I'm OK in a half hour, sometimes in 2 hours, and sometimes this entire process does not work at all. While I do get some pain relief I am never pain free.

This is all in addition to my daily medical regimen.

Last week, I got to the point where this process wasn't working AT ALL. So I have Celiac's and my body doesn't digest or absorb pills correctly or sometimes not at all.

Instead of being admitted to the hospital again for treatment - My Neurologist set me up with outpatient IV medication infusions for about 3 hours a day for 3 days to try and break status migranousis. THIS SUCKED. The medication burned horribly through my veins at a very slow pace for almost 3 hours straight. So, of course all of my muscles tense up. I was worse off than I was before I started this treatment. I can handle just about anything at this point, but this was rough.

I checked the doseages of the IV medications and they were much lower than what I usually need. Because it didn't work, and I needed stronger meds, MY DOCTOR WANTED TO SEND ME BACK TO THE HOSPITAL.

Let me tell you, I don't want to go back to the hospital more than Vin Diesel doesn't want to back to jail in every single Fast and Furious movie.

Also, in the past few weeks:

I saw a pain management doc - who offered no suggestions or help.
I saw a rheumatologist to determine why I am a ball of inflammation and swelling. She was the worst doctor I have ever had to deal with.
I've had more tests and more bloodwork.
I started treatment with a chiropractor to loosen up my neck, back and shoulders.

I was officially tested and diagnosed with fibromyalgia. OK.

I hired a lawyer!

I was approved for my medical marijuana patient card! I have a consultation at the dispensary in March!

I discovered gluten-free EVERYTHING bagels!

These things were made possible to pay for because of this fundraiser.

I bought a full body pillow so I can sleep comfortably at night with less pain! It was delivered on Valentine's Day so it made being single not so bad because I just cuddled with... the pillow instead.

I am still battling the SAME pain flare for almost 3 weeks. I've managed to stay out of the hospital so far, although I accept that I might need to go.

As with most things in life, good things always come with the bad. While I am scared and nervous about what is next, I know I'm getting closer (even though the process is long) to Mayo Clinic.

I can't predict what will happen with my health in the next hour, but I'm still trying my hardest to stay positive. I have days where I'm in so much pain where I just completely give up and say, "It's fine I'll just be a sick person forever least I have my cat."

But then something will happen, usually kind words of support from people like you and I manage to pull myself out of that hopeless mindset and complete panic because right now I have no idea what the rest of my life looks like.

HALFWAY THERE! Thank you all. I am your forever friend now, whether you want me to be or not.

Sharing is caring.

- Amy

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Update - Jan 25th.

Hello friends!

The Good Place is hilarious and you should watch it!

Thank you so much to all of you for helping me out during a super rough patch. I say "patch" because I am THAT determined to recover and get my life back. I desperately want to get back to writing, and most importantly spending time with friends and family. FOMO is real.

A lot has happened since I started this campaign, which yes I still feel weird about.

So, if you're curious - HERE WE GO:

I had another flare about 5 days ago that I am still fighting. Nerve pain in the face, nose pain in the septum and lateral wall, migraine, muscle spasm, and overall body aches and tremors. It needs to let up, because I'm not going to the hospital!

Let me tell you how this happened. I was asked to try another type of medication to treat Trigeminal Neuralgia (nerve pain in the face). I agreed to doing a trial starting with 75mgs of Trileptal (the normal dose is 600 mgs). The first two days I didn't notice a difference except that it knocked me out for hours.

On day 3, I got a migraine around 4pm. I took my medication and felt a little better but could not sleep. I also couldn't walk straight or find the right words to finish a sentence, my balance was off and if I moved too fast I got very dizzy and sick to my stomach. The strangest side effect were muscle and joint tremors. Basically from my ear to my toes my body was jerking all over the place with involuntary movements. You know sometimes when your hand or foot jerks when your falling asleep? That was me for days. Even though I was using my medications as directed, it didn't matter because this death pill also causes medications to be "less effective." NOW, I already have a hard time with pill form medication because my body doesn't always absorb anything in the digestive tract (thanks Celiac). This is why I sometimes require IV medications.

It turns out that Trileptal can make migraines occur more often if you already suffer from migraines. And everything weird that was happening were actually dangerous side effects of the medication.

I spoke to the doctor on call over the weekend and he told me to stop taking the medication immediately, and because the dosage was low I wouldn't have any withdrawal symptoms like a seizure. But what I did have to do was increase my other medications because the nerve pain and migraine were so bad from the PILL THAT WAS SUPPOSED TO HELP.

Sorry for caps lock, this is incredibly frustrating. I've been off the medication since Sunday, but noticed the skin on my hands, face, arms, and feet were peeling off. Apparently that is a side effect, too. This has been my situation for over a year now - trying things, the things don't work, but actually make me worse. It's been a year of constant setbacks. I had a great few months over the summer/fall and I know I WILL get many more great, pain-free months.

We also discovered that there is gluten in my current birth control, that I was put on to control hormonal migraines and PMD. So, I've been glutening myself everyday for well over a year with this pill.

My Celiac disease is very different than other peoples. Not everyone has the same symptoms. For example I don't have digestive symptoms, but I am extremely sensitive to where gluten in medication and beauty products and a small crumb cause a Celiac flare up.
I once accidentally ate a small onion ring that was misplaced onto my gluten free burger at Red Robin and I was sick for days. So, this discovery with the birth control was definitely making things WORSE for me and maybe even causing some of my symptoms. But since there aren't any local doctors who fully understand my Celiac Disease - Mayo Clinic has an entire Celiac Disease Center so I can finally be treated and tested properly. There is a type of Celiac Disease that doesn't respond to gluten-free eating and you still suffer with all the symptoms - this could easily be me because I haven't eaten gluten in years but I still feel like I got hit by a bus.

Here's some info if you're interested. Like I said - I would be using this platform to educate people about "invisible" diseases.

https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

Now for some GOOD NEWS:
- A lawyer accepted my case and we already got started with the mounds of paperwork. I have yet to open the scary envelope with the contract and fees in it.

- I am now being treated by a chiropractor. She' s wonderful! I had my first treatment yesterday. Turns out my left hip is 4 inches higher than my left, and my neck, back, hip, shoulder are all balls of muscle spasm on inflammation due to my body trying to guard when I'm in pain. All good things - she really thinks she can help me. So even though I can hardly move and I'm covered in heating pads...No pain no gain.

- I have an appointment at a pain management clinic next week. I'm hoping they can help me better manage my pain, and maybe suggest options I don't know about.

- I also have an appt with an allergist/immunologist to get blood testing and a lot of other fun things.

- Working with the case manager at Mayo is fairly easy. I'm in the process of getting letters and reports from all of my doctors, including test results and imaging. Once Mayo has everything, a team of doctors go over my case and decide on a care/treatment plan. At that point I will make my appointment and off I GO!

- Any finally because of all of you and your sharing, I am halfway to my goal!

Thank you so very much. I'm get closer and closer every day. Please share, every little bit and shares are very helpful. You're all so amazing and I'm overwhelmed with all of the support and love I have gotten from all of you.

- Amy
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$14,130 of $30,000 goal

Raised by 385 people in 4 months
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