Carol Perry -our motivator needs our help!

$14,850 of $25,000 goal

Raised by 111 people in 1 month
Created March 30, 2019
Fundraising Team
on behalf of carol perry
Our friend Carol Perry is sick- she is now having to endure chemotherapy every day this month  which is causing the most energetic person I know to be immobilized.  She is unable to work and we dont know when she will be able to again.    Everyone that knows her has never gone to a class that she has taught and not come away happier and stronger.  It is now time for all of us to help her out.  While I dont know the technicalities of her disease, I do understand how financially crippling an illness like this can be for anyone - Let show our love and support for this wonderful person who is an icon to the fitness world in New England and the country.
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he Rescue...

The desperate diagnosis I’d been searching for came late February 2019 , I had been sick for 18 months prior. Vasculitus small cell effecting inner ear, sinus and upper respiratory. I had seen over 20 Drs who weren’t able to catch this disease. . I was gratefully recommended by my neurologist to see Dr Gilek from Brown University which was an excellent reference. 1 st appointment she aggressively sent me for tests and wanted me back the next day, as she told me I knew there was concern as she wanted to start immediate treatment. Under her direction I started quickly on chemo injections for one month once a week. Behind that she scheduled me to continue Hospital chemo another month of infusion weekly.
15 days later I was not able to start that immediate treatment because my insurance company would not approve the medication, they would not approve chemo unless it was generic form, however there is no generic for this chemo.
During that time I had seen my sinus doctor in Boston and he referred me to a Vasculitus specialist right there.
I literally was sitting again in Boston the next day with the vasculitis specialist clinic.
They changed my prescriptions around and wanted me to start immediately taking an oral chemo for three weeks and then I was going to go to their clinic and get the same 6 hour infusion Brown had planned on. Again insurance company sat another 15 days not approving Chemo needed to control this nasty monster. Again refusing my medicine for a generic which there’s not one available.
I was left to get sicker ... I was and I did. My body was failing now fast . The insurance companies literally left me to fail. My body I knew and cherished and respected through health and fitness over my entire life was failing me. I was beyond heartbroken. Insurance companies don’t care or help. If there’s not a generic drug to replace they let you fall and walk away. Bye bye life. We need a generic drug otherwise we don’t hear you, care about you surviving, it will move to help you until it’s the cheapest. .
I now had lost all feeling in arms legs hands and feet. Dr Nikes rushed me to Mass General for admittance. Because the insurance company’ made me wait one month my body had been fully attached by disease. He said that because insurance companies wouldn’t spend the $4000.00 for the medication needed they now would be billed a three day full blown hospital stay.
And then the rescue happened.
The picture you see is my team of hero’s who stayed by my side, the entire time I received back to back infusions. This team was medicine drs, specialty drs, physical therapists, and my hero team of nurses who stayed my side.
A very major shout out to Mass General Hospital Medical team that rescued me from a medical catastrophe. This is my anchor my life right now. I have such a journey ahead to continue but the love , compassion and care these hero’s gave me saved my life.
I am extremely grateful and thankful to each and every single one of you who support me.
Your love has become the wind beneath my wings. May 27 th I’m back to Boston for another double dose. This is such a tough ride. I didn’t think I could do this , but because of you all , I know I can. I can do this. I love and thank you from my deepest heart strings. I will continue to pray for you all and please keep me in your highest vibe
Much love and gratitude,
Carol Perry
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Hey hey hey !! I'm just saying that I'm keeping it very real over here! I am full blown blasted on 60 mg of Prednisone and can I tell you what a ride this is?! I never dreamed I would have such a love hate relationship with this drug to keep this nasty ass disease Vasculitis in check until they start chemo. No workout that I've ever done has kicked my ass like this evil thing. WOWWWWWW!! I it keeps kicking, but guess what? so do I. I'm stronger then this piece of crap. What are the chances being admitted into Mass General Hospital today are that my physician assistant nurse took my hip hop classes back in the day. God is definitely great as he puts people in your path to get you through the challenges your facing.
I'm starting round one of chemo today and round two or a different chemo the next day.
Staff here is exceptional. I've never seen such quality care. Well adios as I go into the cosmic bliss of heavy metal medicine. I'm praying for you, and please keep your good vibrations and prayer onto me.
Great hope and love.
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Great News from the Boss
May 7 th, 2019 / Update

Friends and family.
I had an appointment yesterday with my sinus Dr at Mass Eye and Ear. He hasn’t seen me since before my diagnosis. Once he understood update with me he recommended that I immediately see a Dr Niles at Mass General who only works with and specializes in Vasculitus. He told me that he is the Dr who discovered correct prescription dosage and type of meds needed to control this disease.
Fast forward today l was called by this office and had an appointment for 1:00!pm . I don’t have much time here and if I don’t hustle there could be potentially great loss. SOOOO I took an Uber up to appointment and have decided to let them take over my full case. Chemo was supposed to start yesterday in RI but I hadn’t heard from that Dr.
I feel that I’ve just been dropped the biggest answer from God for this sudden aggressive switch. Today’s appointment gave me such hope vs the past constantly hard heavy depressing news I kept being hit with.
The roads still long but this teami met with today only does what I desperately need. They are excellent.
Tomorrow I start all new meds with them. Chemos in this mix along with different medS HOWEVER I walked out smiling feeling like I am out of the never ending hill climb in 2 Nd gear and I’m now cruising.
Much gratitude, hope and Love !

I know this is right.

Carol Perry.
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May 4 th, 2019 Weekly update to all.

Dear friends and family.
I’ve officially had a two week break from my first round of chemo. The first week I was off was probably my most difficult week so far throughout this journey. Because both injuries, disease are located in my head and the dizziness and imbalance was double dosed beyond unbearable. Unfortunately, the medicine, which causes extreme dizziness is working on the disease and the nerve damage is constant imbalance dizziness works against one another . I have no idea how I got through that, but after 6 days of torture the medicine finally left and I was left with just the nerve disorder imbalance which I openly welcomed versus both together . The 2 Nd week I welcomed heavenly energy back in my body which I haven’t felt since Dec. so I gently took advantage of feeling my body’s ability to just move.
I actually drove my car down to Marley and Tucker’s bus stop to meet them this past Thursday. I haven't been able to do this since December. They both ran off the bus and hugged me so tightly. I swear I’m crawling through this for the love of these precious souls. I’ve got to get back to them I was the fun Grammy. I am the fun Grammy. I’m going to be that Grammy again. I won’t be able to get to their bus stop again for a while but I felt so happy to. I knew I had a small window of time I’d be up so I respected energy and paced myself carefully. I’ll never stop showing up for those kids.
There was a delay from my hospital chemo because of a pharmacy mess up however this week, May 6 th I’ll be receiving the 2 Nd round of chemo at RI Hospital. I am scared of this round. Just because it’s another dose of heavy chemo pretty much taking over the blood oxygen life flow I’ve only been used to my whole life. I am anticipated discomfort but am trying to be as brave as one can be when they are faced with life or death.
California brain therapy for the damaged vestibular nerve is on my mind every day. I’m striving to get out there as soon as this 2 Nd round is complete. This is impossible to live with. It’s unbearable. It feels like, head is not on my body. Then onto full education , nutrition and care of how to live with Vasculitis. A way to go. But it’s step by step. I’ve surrender into the fact that I cannot work any longer. That was strange to grasp as your weekly, yearly organization of your personal management is now gone.
The GFM page is so so so so so helpful when your faced with illness. Thank you beautiful people, thank you beautiful souls each and everyone who’s so kindly donated towards it. You have donated enough money so far for me to get out to California. Laurie Kirby send me a plane ticket voucher from her film, music festival company to get me out there. I fell on my knees with gratitude. Thank you sweet Laurie The week long stay and stay is 6000.00 so I am grateful and able to heal my brain. 5 days of 6 to 8 hour days with physical therapy rehab for brain rehab. I can’t take my eyes off that hope.
My TDI runs out June 1 st. Kirby Perkins Construction BLEW ME AWAY and have offered to carry my medical insurance through chemo treatments until my Medicaid kicks in September Tom Perkins, Gerry Kirby and Marie Iriye you are so appreciated and loved by me and my family This was such a saving grace to my healing journey. Thank you. You will be blessed over and over again for all that you give back to those in need. I’ve never seen a company help so many in need with their generous donations they give to many. I love you guys I miss my sweet little job with you beautiful people.
The money I’m receiving is covering rides back and forth to Boston Mass Eye and Ear because I cannot drive. Thank you Jay Aguon and Joanie Hartzel for caretaking driving me to all places. Your both blessed and give me so much of your time. I’m forever grateful to you both. Its also covering high medical bills that pour in daily from 4 hospital sources and 6 drs. And then over to my final leg of functional medical Ultrawellneess Center which prepares you how to live with the disease many more Tests, drs visits and nutrition cost is $11,000.
Please know that every single phone call, card, soup and meal delivery, flower delivery, visit, book, groceries and truly love and support your shed has been overwhelmingly received and appreciated by my heart. I’m sorry if I cry when I see you...this is rough. I try to be strong but sometimes I can’t be and it’s in those times that your arms catch me and I can get up and do it again. It’s because of all you beautiful people that I am getting through this. I love you all and am thankful for each second I have here. Here goes round two.

PS. I just walked outside 1/2 mile around my block. ! MUCH LOVE AND GRATITUDE.

Carol Perry
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$14,850 of $25,000 goal

Raised by 111 people in 1 month
Created March 30, 2019
Fundraising Team
on behalf of carol perry
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