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Amy's Emergency Medical Fund

$14,783 of $40,000 goal

Raised by 401 people in 10 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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I’M GOING TO HOSPITAL CAMP!


Hello!!

WOW - I can’t believe it has been almost 7 months since starting this fundraiser.

I have such a hard time with conceptualizing time thanks to medicarions.

I’m stuck in last summer still and never know what day or time or month or YEAR it is!

I even had a birthday!

I have FINALLY been accepted into one of the best headache clinics in the country and I have a wonderful new doctor who is leading cannabis research AND he’s amazing.

My first appointment I felt hope and relief. And he ASKED me if he could be my doctor for facial pain, body pain, and head pain.

I said yes.

I’ve already gotten approved for a new prevention medication called AMOVIG. It’s a tiny injections once a month that I will do at home. It’s expensive... somewhere around $500 a month for one injection! And because insurance companies rule the world - they decide who gets approved.

I’m going to INPATIENT CLINIC at last!!! Dr. Young my doc and head of the program decided it’s the best care plan - I’ll be getting IV treatments and testing I’ve never had before.

I’m calling it hospital camp, the unit is just for the clinic, I’ll have a private room, my Star Wars blanket. He also said something about yoga and activities/classes.

I’ll be at Thomas Jefferson Methodist Hospital for I think 2 weeks.

The hard part will be detoxing from the rest of the methadone, which... is honestly the worst time ever.

Once I’m off the last of the opioids, I’ll be starting my new treatments! Dr. YOUNG even told me to bring my medical cannabis TO THE HOSPITAL!

Talk about making strides!!

I’m excited and I’ve got good vibes about all of this, but I’m also scared and very anxious. It’s going to be hard and I’m going to be lonely being away from home and my fam and friends.

I was really hoping for Mayo Clinic, but I still can’t travel that far or get on a plane and I can’t wait any longer. I busted both of my ankles just getting to my new doctors office. And I don’t do well in the car longer than a half hour. Bumpy = migraine trigger

I’ve been battling this illness for too long now and it’s only gotten harder. I had months where I felt great! I have less pain flares thanks to the right strains and delivery method of medical cannabis. Thanks to cannabis I’ve had days where I feel so much better, but I still have to fight! Using medical marijuana is effective for pain treatment but it’s not for everyone. Instead of taking a pain pill, I vape high CBD strains just one hit once a day and it calms the inflammation, but it’s not a cure.

I’m just going to bullet list now my hands are getting crackly.

1. For the past 3-4 months the unexplainable body pain and arthritis-like symptoms have turned chronic. At the moment my hands and fingers are painful and I can’t use my hands well. Same with my feet and ankles - which swell up often like they are broken. My joints crackle in pain, my fingers swell, my shoulders swell, my knees, hips, neck, back - every day.
2. Out of all of my doctors and all of the bloodwork and testing - no one knows what is causing this. Maybe fibro? But I just can’t accept that yet and my docs aren’t either.
3. I still have horrible migraines, nerve pain in my face. Instead of flaring every evening, now I only flare maybe 2 times a week where I’m stuck in bed and can’t really move.
4. I successfully detoxed off my pain meds! My doctors are certain that using opioids to control my pain down to a level I can handle on a daily basis - was/is causing Opioid-Induced Hyperplasia and Allodyna. Hypersensitivity
5. The detox plan didn’t work! I got off Percocet and on to low dose methadone, which is a common treatment for fibro and chronic pain illnesses. I just got WORSE because for me I’ve learned that methadone is a nightmare and just made me HYPERSENSATIVE I can’t deal with smells or sounds or touches or I’ll flare.
6. Read more here: https://migraineagain.com/touch-sensitivity-reveals-
7. Detoxing from opioids is one of the hardest things I’ve done and I thought I was dying. But hello hi I did it!

You know, I’ve been stuck at home mostly and missing out on just about everything. I haven’t left the house often because walking with this joint/muscle pain only lasts for about 5 minutes before I have to sit.

I just miss my life. I’m starting to feel like a hermit that’s behind on life and I’m not sure about my future either.

I’ve been doing A LOT to combat horrible anxiety and depression - sort of a cleanse - emotionally and physically of everything! I’m actively cleansing and letting go of the past because that’s not where I belong.

I made this little sacred space to continue my meditation, journaling, and healing practices. A quiet, comfortable spot to cope with my pain through mindfulness, affirmation, and self-care. It’s rather lovely and comforting.

I keep saying I want to get back to myself Well, I don’t anymore. I’m a new person coming out of all of this. “Don’t look backwards, you aren’t going that way.”

So I’m going to go forward however much I have changed and hopefully live the best life I can for myself and the people I love - pain-free. I refuse to let an illness define my life.

Also my career has been at a standstill and I HOPE that when I’m ready I can start fresh writing my ass off in the entertainment industry. My passion for my work isn’t going anywhere!

Thank you, for all of your support, generosity, kind words, birthday cards, and just reaching out to say hello, or even send random MEMES, or gluten free donuts.

Ya’ll mean the world to me,

Amy.
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After an auto-related accident today in front of the hospital entrance.

DEFEATED

This is chronic pain. This is chronic illness. This is Invisible Illness.

If you ever wondered what chronic pain conditions and illness look like in the real world: here ya go.

I can't possibly show you a more vulnerable side of myself beyond this photo. I've realized I'm a spoonie and have met great souls along the way.

This is me on my bad days. On my good days I look, act and can function like good 'ol Amy G.

However in the past 2 months, more of my days look like this. And I have no idea how I am still fighting.

Today in front of the hospital entrance, I was being dropped off for my infusion treatments. When a stupid accident involving my car driving itself away occurred.

My right leg was already out of the car, my foot on the pavement.

My car drove itself forward and dragged my foot and leg along with it. After screaming "THE CAR IS MOVING" - my mom got in slammed on the breaks - the car door flung back and crushed my leg/ankle/thigh.

I got out and stood there in shock, in trauma, crying my eyes out in complete confusion.

They got me a wheelchair and wheeled me to the cancer center for my appointment.

The charge nurse took one look at my shaking and crying and my leg and sent me strait to the ER.

She called and told them what happened and that I need to get back there for my infusion treatment today.

The ER doc and Nurse Mike worked very quickly. IV in - 4mgs of morphine and nothing, Zofran for nausea and nothing.

12 X-rays later, Nurse Mike cleared me - no obvious broken bones...

But a crush injury to my leg and foot. As well as a fat swollen ankle and a severe sprain. Packed me up with ice and took me back to the cancer center.

I could barely walk before I even got to the hospital for treatment!

This was the most amazing ER experience I've ever had. And I have a theory here - I had an injury they could see - so I got excellent treatment.

Many trips to this same ER for an "invisible illness" were a total nightmare. Again, previous docs and nurses couldn't see the pain.

Nurse mike gave me a taz bandaid and handed me off to Nurse Jackie. The all came in my infusion room, made sure I was comfortable.

My veins are deep and fragile - so I got a "big stick" to handle the pumped meds.

Yesterday I went in with a pain level of 5. Today an 8.

My IV medications for this break the pain cycle treatment are: Zofran, Ativan, DHE, Benadryl, Toradol, Steroid - heavy brutal drugs.

I laid there in so much pain I don't know how I was even alive for 3 hours.

Not ONE thing helped my crushed leg. It's bad. Real bad.

I got help getting home with crutches and a walker. No pressure on the leg, elevate, ice, compress.

I'm covered in heat and ice, trying my best to meditate and stay calm.

Now, I REALLY can't walk - not even across the hall to my bathroom.

I used to wonder how/why random shit like this always finds me for no good reason. I've made amends with the universe, opened up my heart chakra to both give and receive love.

I don't know how I am still going. I should have died in my first severe car accident in 2007.

I remember the Trauma doctors cutting off my clothes, a nurse holding my hand saying, "Honey, you got lucky today. Someone up there still wants you alive."

I wonder now if that is still true. And this is what makes me so sad and disheartened sometimes.

Thank GOD for my parents and support system. Thank GOD for the docs and nurses desperately trying to help me.

My family is bogged down with stress and uncontrollable worry and are trying their best to be caretakers for me, something I thought would never happen.

We are discussing a home health aid/nurse - but no idea how I can afford that. I have no funds. This gofundme has helped me survived financially.

We're tired and frustrated and i don't know what to do anymore.

One month left until I get admitted into the headache/facial pain Clinic. ONE MORE MONTH!

I don't need to feel great, at this point I'd be fine with just feeling any better than this.

All I want is my life back and for my family to have theirs back, too.

Thank you for supporting, donating, sharing, good vibes and positive thoughts. Just, thank you.
Yes that's a Star Wars Porg.
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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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Raised by 401 people in 10 months
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