Justice for Janelis’s health.
Donation protected
I finally have to let go of pride. It’s been a long journey without asking for any help so here’s my story and I hope you take the time to read.
Back in high school I started to notice changes. My weight gain, purple stretch marks on my inner thighs, and my mom would mention it so the pediatrician but she just dismissed it and said I was just eating more. Which was not true and my mom always knew something was up because she’s the one that always cooked in the house. Fast forward to 2014 that I had my son. I gained weight of course and I was at 200 pounds when I gave birth. I was getting more symptoms but I thought they were normal because I just had a baby. Months and months passed and the weight kept coming and stretch marks weren’t leaving. I was working out everyday! I started getting extremely painful “migraines” and I was in and out the ER. No one bothered to do a ct or mri scan. Sent me home with painkillers. In April of 2016 my mom finally convinced me to see a neurologist and they found a tumor. They kept pushing it off because they said I didn’t have anything to worry about until June that I finally had an appointment with a neurosurgeon but a few days before that my mom came to visit me and saw my whole right side of my face completely swollen. We rushed to orlando health to get a second opinion and I was admitted immediately and two days later I had an emergency brain surgery. From the middle of my head to the right side of my ear. There was complications with the tumor and now I only have two nerves working on my right eye(you have a total of 7) and I was woken up after surgery for the surgeon to tell me it was permanent. That’s when I found out about the disease “Cushing’s.” I then went through withdrawals because of all the painkillers they kept giving me and I had to stop cold turkey. (Worst experience of my life).
My body was producing too much cortisol (stress hormone) which caused all the symptoms.
I have had 5 surgeries on my eye and eyelid. I can’t use my eye anymore. They did the best to make it look more “normal.” And my insurance will not cover cosmetic surgery for it although it wasn’t my fault.
In 2018 I was able to get radiation done because they weren’t able to remove the whole tumor. The radiation was only successful in the sense that the tumor is not growing but it still causing the affect of the cortisol increase.
I cannot get another brain surgery to remove the rest of the tumor, and another radiation treatment is risky to the point it may cause more blindness. This all happened when I was 21 and I am now 26 years old. My son is now about to be 7 and to be able to enjoy anything with him, I had to get a wheel chair. I am now 261 pounds. My bones hurt. I’m in pain everyday but I have to keep moving and going for him. Anxiety and depression are also a part of this journey. I went through a lot of emotional trauma as well since a lot of people had left my life during the hardest times. Then the pandemic did not help at all. I push myself to try and not be miserable because people stare and judge all the time. My family has been supporting me through it all and I know it’s hard.
I have the option to remove my adrenal glands which will stop the cortisol. Yes it will give me Addison’s disease but it’s much more treatable and in my support groups many people have not regretted that decision. Gives them a better shot at life. This disease has made me lose time to enjoy the simple things.
The surgeon still wants me to get another opinion, although not knowing my story or even bothering to check in with the doctors who gave me the okay. My case was even presented to the cancer/tumor institute and they were all in. Because of one doctors lack on documenting everything I have already done and been through, they need me to see other doctors that are more than 2-4 hours away from me.
I depend on others to take me everywhere and help me with my son. This is extremely hard on me because I don’t think it’s fair. I can’t work because of the disease. My parents are already doing so much and so is my fiancé.
To now find out someone else in the family needs help too but because of their privacy I will not put their situation out there.
But how am I supposed to do all of this?
I may have to travel to get the best care and finally have a chance to enjoy life with my son.
Or to be able to get a lawyer to fight this with me!!!
I have never asked anyone for money but unfortunately this is going to cost me money to get close to finally getting better and getting what I deserve.
God for sure will give me the justice and I will give Him all the glory.
If you can please help in any way! I will highly appreciate it.
Understand that it’s never easy to ask for help but since 2016 I haven’t gotten any even after a brain surgery.
God bless you and I thank you in advance.
Back in high school I started to notice changes. My weight gain, purple stretch marks on my inner thighs, and my mom would mention it so the pediatrician but she just dismissed it and said I was just eating more. Which was not true and my mom always knew something was up because she’s the one that always cooked in the house. Fast forward to 2014 that I had my son. I gained weight of course and I was at 200 pounds when I gave birth. I was getting more symptoms but I thought they were normal because I just had a baby. Months and months passed and the weight kept coming and stretch marks weren’t leaving. I was working out everyday! I started getting extremely painful “migraines” and I was in and out the ER. No one bothered to do a ct or mri scan. Sent me home with painkillers. In April of 2016 my mom finally convinced me to see a neurologist and they found a tumor. They kept pushing it off because they said I didn’t have anything to worry about until June that I finally had an appointment with a neurosurgeon but a few days before that my mom came to visit me and saw my whole right side of my face completely swollen. We rushed to orlando health to get a second opinion and I was admitted immediately and two days later I had an emergency brain surgery. From the middle of my head to the right side of my ear. There was complications with the tumor and now I only have two nerves working on my right eye(you have a total of 7) and I was woken up after surgery for the surgeon to tell me it was permanent. That’s when I found out about the disease “Cushing’s.” I then went through withdrawals because of all the painkillers they kept giving me and I had to stop cold turkey. (Worst experience of my life).
My body was producing too much cortisol (stress hormone) which caused all the symptoms.
I have had 5 surgeries on my eye and eyelid. I can’t use my eye anymore. They did the best to make it look more “normal.” And my insurance will not cover cosmetic surgery for it although it wasn’t my fault.
In 2018 I was able to get radiation done because they weren’t able to remove the whole tumor. The radiation was only successful in the sense that the tumor is not growing but it still causing the affect of the cortisol increase.
I cannot get another brain surgery to remove the rest of the tumor, and another radiation treatment is risky to the point it may cause more blindness. This all happened when I was 21 and I am now 26 years old. My son is now about to be 7 and to be able to enjoy anything with him, I had to get a wheel chair. I am now 261 pounds. My bones hurt. I’m in pain everyday but I have to keep moving and going for him. Anxiety and depression are also a part of this journey. I went through a lot of emotional trauma as well since a lot of people had left my life during the hardest times. Then the pandemic did not help at all. I push myself to try and not be miserable because people stare and judge all the time. My family has been supporting me through it all and I know it’s hard.
I have the option to remove my adrenal glands which will stop the cortisol. Yes it will give me Addison’s disease but it’s much more treatable and in my support groups many people have not regretted that decision. Gives them a better shot at life. This disease has made me lose time to enjoy the simple things.
The surgeon still wants me to get another opinion, although not knowing my story or even bothering to check in with the doctors who gave me the okay. My case was even presented to the cancer/tumor institute and they were all in. Because of one doctors lack on documenting everything I have already done and been through, they need me to see other doctors that are more than 2-4 hours away from me.
I depend on others to take me everywhere and help me with my son. This is extremely hard on me because I don’t think it’s fair. I can’t work because of the disease. My parents are already doing so much and so is my fiancé.
To now find out someone else in the family needs help too but because of their privacy I will not put their situation out there.
But how am I supposed to do all of this?
I may have to travel to get the best care and finally have a chance to enjoy life with my son.
Or to be able to get a lawyer to fight this with me!!!
I have never asked anyone for money but unfortunately this is going to cost me money to get close to finally getting better and getting what I deserve.
God for sure will give me the justice and I will give Him all the glory.
If you can please help in any way! I will highly appreciate it.
Understand that it’s never easy to ask for help but since 2016 I haven’t gotten any even after a brain surgery.
God bless you and I thank you in advance.
Organizer and beneficiary
Janelis Ortiz-Suárez
Organizer
Kissimmee, FL
Christopher Perez
Beneficiary