Amy's Emergency Medical Fund

$13,930 of $30,000 goal

Raised by 378 people in 2 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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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.


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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Happy Monday!

Again, thank you all for donating and sharing. I'm over halfway to my goal.

Speaking of my goal - we're learning that expenses are going to be much more than I previously determined. SIGH. In the process of getting Mayo Clinic everything they need. They also charge three times as much for an MRI than average.

So, I bumped it up in hopes of being able to raise a bit more. MEDICAL EXPENSES are insane and hopefully by the end of this week I'll have a lawyer to help me with disability/health insurance and any other government benefits I am eligible for.

A lot of you sent me very helpful information so I thank you for that as well.

On Sluder's Neuralgia:

Here is a great article that explains another nerve disorder that I have that causes pain all day, every day on the entire left side (sometimes right) of my face.


Now, here is the crappy part. I've already had reconstructive surgery last January (as detailed in the link above) of the nose/sinus/face area to remove "contact points" and bone spurs that were pushing into my sinus cavity and the Trigeminal Nerve.

I never had a problem with migraines before my surgery - but I do now. I am also still in pain - soooo what gives? I was told the surgery would FIX IT instead I had complications. I kept seeing my surgeon, in pain, and with a messed up nose full of blood and scabs. He kept giving me antibiotics to clear up an infection in the mucous membrane. This went on for a year. Now this is only one part of a complex situation.

I went to get a 3rd opinion at Penn Medicine by one of the best ENT doctors in the country. He did a full exam and discovered ANOTHER CONTACT POINT and told me that my previous doctor did a good job but missed a spot. OMG are you serious?

OH DUH! Now why couldn't my previous doctor figure that out for the past YEAR?

Now, I need the SAME surgery again - but because my situation is so complex and rare - none of my doctors want me to have this surgery because it could make things worse. My new doctor, who is also head of surgery at PENN said he is "terrified" and would not do the surgery unless it's a last resort. I do appreciate his honesty. Meanwhile I'm sitting there begging him to just rip everything out of my nose and face and fix it and that I'll be fine I promise! This amount of pain leads to desperation.

This daily pain triggers chronic migraines, muscle spasms in my neck/back/shoulder and severe aches and pains in my joints and muscles, like my arms and legs. This is what I call a full flare. What usually happens is I go from a pain scale of around 5 or 6 to a 10 in just a few minutes.

So far I have had 3 flares since I left the hospital in the beginning of January. One being RIGHT NOW.

It was 60 degrees on Friday and then 18 degrees on Saturday. My body did not like that so along came a fierce flare up. The weather change and cold weather are my worst enemies. My entire body hurts, I can even feel nerve pain in my teeth and the roof of my mouth making it painful to eat. I joke that I need one of those stair chair lifts and a walker - but seriously it would help me move around easier. I'm a ball of inflammation. And I do mean ball - because I gained 60 pounds in a year from medications and being sedentary (the pain gets worse with movement). And I know that the extra weight is causing aches and pains as well - my body isn't used to supporting this much weight. I also had to buy all new clothing. I got out my warmer clothes and oops - all XS and now I'm an XL. I don't even really want anyone to see me like this.

I also started a new medication trial on Saturday - so far it is not helping the pain very much, but it is turning don't me into a space cadet. You know like walking crooked, dizziness, to where am I and why did I walk into the kitchen? I will try for a few more days to determine if it MIGHT work for me. In fact - with all the medications and treatments I have tried - 2017 is a total blur except for a few months when I felt well enough to have a life.

Again - THANK YOU! Your donation or your share is helping me at a time when I am in need and unable to work.

A very special shout out to Screen Junkies, SlashFilm, and Legion of Women for sharing on social medias and YouTube shows. The film and geeky entertainment community is quite amazing.

And seriously I still haven't been able to see The Last Jedi even though the director Rian Johnson donated to my campaign.

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From the bottom of my heart, thank you so very much for your generous contribution to my medical fund.

Both my family and I are overwhelmed by your kindness and grateful for your support at a time when we need it the most.

Amy G.
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$13,930 of $30,000 goal

Raised by 378 people in 2 months
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