January 6, 2017
Happy New Year! I just wanted to write this and update everything that has been going on. I haven’t written in a while, but since I am rapidly deteriorating and in desperate need of treatment (i.e. surgeries/procedures, medications, doctors, etc.) that we can’t afford it, I figured I would write and ask for donations so that I can receive the much-needed donations. We have gotten way over our head in medical expenses. I also wanted to write this because I wanted others to know about what I am going through since it isn’t a common illness. Knowledge is power and if I can raise awareness through my GoFundMe page, then perhaps suggestions and other resources of help can be found.
Life has been harder than ever lately. I am forced to live a life within the 4 walls of my home because I am too ill to go out, my social life is nonexistent, the only thing FUN and I have in common is the “first” letter, and I can’t even become the doctor that I always dreamed to be. My life basically has reverted to being with my dog, Scooby, who has been my very best friend and don’t know what I would do if I didn’t have him in my life. Every single doctor thinks it’s a miracle that I am still alive especially since I have organ failure, depleted blood levels, low electrolytes, weigh so little, etc. They are amazed with how much strength that I have. Yet, they all know that even though I have been fortunate to stay alive this long, they all know that it can’t last forever especially without medical treatment.
There is so much going on that I don’t even know where to start. I guess I should begin with a little bit of what happened with me to get me so sick.
I suffer from rare, complicated and life threatening illnesses known as dysautonomia, reflex sympathetic dystrophy, severe gastroparesis, intestinal pseudo-obstruction, short bowel syndrome, and even a pituitary brain tumor. I even have developed a host of other problems secondary to these illnesses such as losing my teeth and teeth/bone erosion, which has forced me to look like a ‘Jack O’Lantern’! I know it sounds like a laundry list and impossible to have, but it’s the truth. Who would have thought that the little signs that I expressed as a child was actually warning signs to this illness? It wasn’t until college that my whole world came crashing down.
When I was a child, I had little quirks here and there that stirred up, but doctors never picked up that I had any of these illnesses. We never heard of these illnesses so my parents never even thought to look further. Who would have thought that the minor stomach problems that I had when I was a baby would have turned into this? But all the docs said at that time was ‘sprinkle some Metamucil onto everything she eats!’ Who would have thought that when I broke a bone and when I skated and changed colors that they were actually showing a portion of this illness? However, I was always able to suppress the illness. However, as high school years were ending, I was getting sicker and it was getting harder to overcome and suppress things. It was getting more difficult to eat and I was losing weight. Yet, we still never heard of any of these illnesses as of yet and therefore, we didn’t know what was really happening. However, after freshman year at NYU, I ended up having foot surgery and that was the end of it. The disease erupted like a volcano and there has been no suppressing it ever since. It has been going rampant throughout my body raging like a wildfire.
Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I spent the last couple of years incapacitated, paralyzed, unable to go out of my house to socialize or work, and unable to sit, walk, shower or even eat. I was an active, healthy teenager, until, without any warning, my life as I knew it was ripped away from me by these extremely rare, painful, and crippling illnesses that will kill me if I don’t get help quickly. I am a time bomb just ticking away and I really hope to be able to be helped before I explode. There are so many times that we don’t even know if I will make it through a day or night!
To begin with, I suffer from dysautonomia, which is malfunction of the autonomic nervous system. The nervous system controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of pupils, and temperature control. As a result, I have trouble regulating all of these systems in the body due to the malfunction of the autonomic nervous system.
In addition, I am crippled by Reflex Sympathetic Dystrophy, which is a rare, disabling pain disorder in which ordinary sensations such as touch, warmth, and even coolness is perceived as painful. I suffer daily (24/7) from sharp, stabbing, tingling and burning pain; severe headaches; paralysis; intense muscle spasms; dystonia; sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; inability to sweat; swelling; deterioration of bones; decreased hair growth; discoloration of the limbs; and painful skin ulcers. Due to how hypersensitive I am, it’s difficult for anything to touch me, which includes even sleeping with a blanket. It ranks higher on the pain scale than Cancer, childbirth, amputation of a digit, etc.
Finally, I suffer from my GI system completely not working. From my esophagus to stomach, to small and large intestines, it is completely paralyzed. My entire GI tract has completely failed me, and I am unable to eat. I am unable to absorb nutrients, have severe muscle wasting/deterioration, and I look cachectic. My weight has plummeted to only weighing in the 60+ range, and I spend every week going to the hospital to have my colon cleaned out so that I don’t go toxic. I am even forced to wear diapers because of my GI system not working. This is not the life I want or should be having. I end up bloating up and looking like I am 9-months pregnant every time I do try to eat or drink something. I am 34-years old and yet, I have to wear diapers because I am always having ‘accidents’ due to the mucous leaking out from the impacted stool. I even have to use a special toilet in order to go to the bathroom because it positions me better.
Ideally the doctors would like to perform a multivisceral transplant on me. But unfortunately, with the insufficient funds, we waited so long that I have deteriorated to the point that I am not strong enough to withstand an operation like this. It is the worst transplant to undergo along with lung transplantation. So, the doctors said that the next step is to just remove the colon because it is imperative to do so and urgently needed. As time goes on and we wait to get funds, I only get worse and weaken further (which makes me a poorer candidate for surgery).
Therefore, the next step is to remove my colon as soon as possible. Not only do I need to remove it because it is completely ‘dead’ and causing other problems and affecting other organs as well, but they found cancerous polyps inside as well. Although they did remove them, they were unable to see how bad the entire colon is affected with the ‘cancerous polyps’ because the colon is so obstructed, paralyzed, dilated that they can’t get past the splenic flexure. Doctors have all agreed that I am one of the ‘sickest’ and most ‘complicated’ patients that they have seen. I have failed all treatments from a medical standpoint, as I have been on every medication available, which have been both FDA-approved and non-FDA approved. Therefore, the only thing left is for surgery.
However, in order for this to take place, it needs to happen outside the New York area, which is something we cannot afford at the current moment. My medical condition is extremely complicated and I not only need to be at a hospital with top surgeons who are capable of handling my unique situation, but I need to be in a place that can also be able to handle any other problem that may develop since my entire body is medically unstable and anything is possible to occur. I am not considered your ordinary ‘textbook case’ and many times my body even stumps and scares even the top physicians. I have had times when I sleep in the hospital with the paddles next to my bed because they are afraid my heart will go out during the nite, I’ve had doctors run out of the room to consult medical books because my body did something that they never see, etc.
In addition, in order me to proceed with the surgery, I will require not only Ketamine to be administered during the operation, but I will need it for days after as I recover in order to suppress my neurological illness. Every time my body is under stress or undergoes ‘trauma,’ my illness is not only exacerbated, but I have a huge chance of my illness spreading and worsening. Therefore, Ketamine must be administered for some days after the surgery to ‘quiet’ the body down and suppress the illness because Ketamine is a NMDA-receptor. However, not many hospitals do not administer Ketamine outside of the operating room, and they are hesitant to do so because it needs to be very closely monitored and done in the ICU. Most hospitals don’t even have the nursing staff to be able to allow this ‘close’ monitoring. So very few hospitals are capable of doing this and all are out-of-state.
Unfortunately, this illness has literally drained us emotionally and financially. Not only do I need help with paying for the actual major surgeries and procedures needed to save my life, but I need help in just managing the illness on a day-to-day basis because without this ‘management’, I will die anyway. I am on countless medication and besides it being extremely expensive, it isn’t all covered by insurance, as some are not on the plan and some are received outside of the USA. Even the ones that are covered have costly copayments and of course they add up quickly. For example, just to be on the medical marijuana, it costs me about $500 a month.
Just to keep me going, I need to take constant medication, which is over 50 pills daily and I even take multiple injections. These include Morphine, Dilaudid, Nucynta ER, Ketamine, and Marijuana to just name a few. Many doctors have told me that the amount of medications that I am taking would be enough to “kill a horse.” I even go every week for ketamine infusions, blocks, etc. because the pain from these illnesses and to control the dysautonomia is too great. The medical bills are way too great and donations are much needed to help pay for these costs just keep me functioning and alive day-to-day.
I also have numerous doctor appointments, procedures, etc. which are not always covered by insurance. I must keep a calendar just for them because I can’t keep track of all that I have. Basically, a day doesn’t go by that I don’t see a doctor or have a procedure. Unfortunately, since my disease is so rare and ‘special’, most of my treatment team is not in the local area. Some of my team is in Manhattan and they stretch to across the country to as far as California. So not only do I have to see them, but I must have money to pay for all the traveling expenses as well. We also must worry and consider all the time my dad must take off from work when my dad is with me at appointments because that is worktime that he is missing and essentially income that he is not making. Therefore, we take a double hit because we are being forced to pay for appointments/procedures that we can’t even pay for to begin with and yet dad isn’t even working to make the money be even able to try to pay for it because he must take me and be there. Even when they are covered by the insurance, it is not fully covered, and the copayments quickly add up as well.
My calendar is basically filled up every day with another medical appointment rather than any social event. Not only am I constantly seeing doctors throughout the week, but I spend at least once a week in the hospital undergoing a ketamine infusion and injections in my spine, as well as another day in the operating room getting my colon emptied because of my GI system being paralyzed. If my colon is not emptied, it is very possibly that my colon will rupture, my organs will further shut down, and my body will go into sepsis. I also spend basically 4 times a week in physical therapy because my muscles are wasting away and we try to keep the muscle wasting down to a minimum and my strength up to a maximum because it isa vital component of my care especially since I have a difficult time making my own oxygen needed for my muscles to work.
Most people think that if you have insurance that it covers everything. The truth of the matter is that insurance is only good when you don’t need it. We pay close to $3000 a month just for health insurance, which we are also having trouble paying for, and it doesn’t cover nearly all my required needs. Yet, we need this plan because without it, things would be so much worse. People ask me ‘why don’t you go onto governmental assistance?’ The truth of the matter is that I am on SSI and receive Medicaid. However, due to my illness and the specialists that I see, most of my specialists do not take Medicaid because they are so ‘specialized’ and can be choosy. Plus, Medicaid is only good in New York since it is “NEW YORK MEDICAID” and I have a significant number of doctors and procedures outside the New York area. As for Medicare, I am not able to receive it because I never worked a day. I did work when I was younger, but just not technically ‘on the books’ to count!’
The financial burden on us is so heavy. We really need to raise a lot of money in order to cover my medical expenses because it is so astronomical. I honestly would need to raise at least $100,000 because I need multiple operations, procedures, and other medical related expenses. As you can see, health insurance alone is $3000 and marijuana is $500 plus everything else. Just my current day-to-day health is so expensive that I really need funds to help me with that as well at this point because I am having trouble even getting that done now. I will also need money for the actual operations, as well as traveling expenses and for money to supplement to pay the bills because dad won’t be working during the time we will be away for the operations (like a month). So, we need to have money to live off of because we will essentially need a place to live for about a month (and that is just for one operation). In addition, I need Physical Therapy every day because I need to keep up my strength. Plus, due to my illness I can’t make my own energy anymore because I my cells get depleted so quickly. So, physical therapy is an essential aspect of my care. It is imperative that I go and this alone costs $100 daily ($500 per week). Without the PT, I will deteriorate and die. The doctors really think this is one of the major factors that is keeping me alive.
I am so tired of hurting. I am so tired of feeling like I am left in the dust. I am so tired of trying and failing. I am so tired of building up my hopes that I am going to get well, then have the carpet pulled out from underneath me because we don’t have the funds to continue with the arrangements. I am tired of suffering. I am tired of watching the whole world move on and I can’t. I am tired of watching others have a life and I am in both physical and emotional Hell that I can’t escape.
For someone so young, I have been through so much. I am tired of watching everyone move forward with their lives and I am left in the dust. I have lost everything I have ever worked for and dreamed of. I was a competitive figure skater, a 4.0 student in college, etc. planning on going into medicine, I had friends, I had dreams of having a family and everything else that a ‘normal’ person would have. Yet, this illness changed everything. For someone who had such big plans for herself to being happy and for making a difference in the world… I fell flat on my face.
I learned the hard way that “health is wealth and if you have your health… you have everything!” I basically lost everything. I lost my friends, life, career, money, etc. Not only do I suffer in excruciating pain physically daily 24/7, but the emotional pain that this illness brings is just as bad. I have become not only a burden to myself, but to my parents. My parents are the only family that I have and are in their 60s. I am fortunate for all that they have done, but I am so fearful of the day that they will not be here because I cannot live on my own, as I cannot care for myself 100%, cannot take myself to appointments, and cannot bring in a salary to pay the bills. It scares me half to death that I am so sick because I know that they won’t be here forever, and yet, they are my entire life because without them I am nobody.
I also don’t want to be a burden to them anymore. They are at the point in their lives where they should be enjoying themselves. Yet, they work like dogs trying to make ends meet, which is virtually impossible. Even by working every single day of the week and countless hours too, we are unable to pay for the necessary medical expenses just to get me well. The medical expenses have drained us so much that we are in such financial debt that we cannot pay our mortgage anymore, utilities, etc. Even putting food on the table is not always doable. It is horrible that no matter how much they try to work (Dad works from 4 AM to 7 PM every day basically) that we don’t have the funds to even pay our bills.
In short, I am in desperate need of help. We have exhausted all methods of receiving help and trying to get me the medical treatment that I require. Setting up this account was very difficult because we were always a family that “gave” and never had to ask for help. However, unfortunately, we have gotten in over our head in medical expenses and in desperate need of financial help to pay for my medical expenses. It is hard to ask for help…. As we start this new year- we are in debt over 100,000. We are even having difficulty paying for our health insurance on a monthly basis and it would be a disaster to have to go without it.
I am very humbly asking for financial help, no matter what size the donation. Even if you are unable to donate, please pass on this site, send a few prayers our way, and if you could read my story through my blogs. Thank you for taking the time to read this. I am praying that my life will only get better so I can live a long and happy one. To better understand what I am going through, please watch the movie “Miracles from Heaven.” It is so close to my story.
I am also selling bracelets as shown below to help me raise money for my medical expenses. The suggested donation for a bracelet is $5. If you would like one, please email me at firstname.lastname@example.org.