I hate to be really saying this because I hate to be such a “beggar,” but I am desperately pleading for others to please help me find a way to receive treatment because I desperately need it. Unfortunately, my health is not “rebounding” at all anymore. Whereas before my health and bloods were on a steady decline, but there were times that we could see spikes of “improvement” and when I bounced back a bit even though I would never bounce back enough to be “out of the woods or anything,” I have stopped showing these spikes and bounces. I can’t remember to be honest with you the last time that I said that my bloods showed any bit of improvement or that I felt any better. I desperately need help as time is really dwindling.
I am really scared I am not going to see the holidays. The way things are going…. it remains a big question mark because of the way my bloods and organs are. I desperately need something to change, but unfortunately, we are completely “broke!” I hate using that word, but to be honest with you… it is the absolute truth. This stupid disease has financially ruined us and as a result, I can no longer receive the necessary treatments that I need to get better. Not only can’t I afford the necessary procedures, surgeries, and actual treatments that can help me improve, but also we are now can’t even afford the very medication that I need to take on a daily basis. I take over 50 pills every day just to be able to ‘function’ somewhat. I take Methadone, Morphine, Nucynta, Dilaudid, Ketamine, etc. I am on very potent drugs and I really can’t survive without them. I am in extreme pain and unfortunately the medications that I need to help me are not cheap. In fact, some of the medications are not covered at all by insurance plan because they have to be bought out of the country since they are not FDA approved. I have tried to do without these medications and tried to cut costs by eliminating these drugs, but unfortunately every time I have even tried to even “cut down” on the amount that I am taking, it has only led to detrimental effects and further suffering. I don’t know what I we are going to do.
I don’t know what we are going to do because I hate to be considered a ‘crier’ or a ‘beggar’. Yet, I really have no choice anymore because this is what my life has come down to. Without the help of others, I fear that I will definitely not only be able to not receive treatment, but I also don’t know how I am going to end up getting my medications. My family has been paying so long for this very expensive disease and unfortunately the well has to run dry sooner or later. The money can’t last forever and even though they wish they could do more for me and would do anything for me if things could be done… there really isn’t much else that can be done. You really can’t get blood from a stone. You know?
So if you have any fundraising ideas or can PLEASE pass word of this website… I would really appreciate it. Like I said before… I am desperately in need of your help and unfortunately my life rests in the hands of the rest of the world because we can no longer afford the necessary treatment or even the medication to help me get me better or even to keep me existing at the state that I am at right now. If nothing else, please say a prayer that something will turnaround or work out because I am desperately in need of a “miracle” or something. The holidays are just around the corner and I really hope that I will be able to be around still to celebrate them. The greatest gift in the world would be able to receive the ability to receive the necessary treatment that I need to continue existing in today’s world. There is so much that I still want to do, I don’t want to leave yet.
I desperately need help because I am deteriorating so rapidly. I am really supposed to be in the hospital, but unfortunately, there really are no funds to do so. To be hospitalized, it would be so costly because it isn’t like I can be put into a local hospital. I would have to travel to a hospital such as in California, Minnesota, or even Washington, which would mean that besides the money needed to go for the treatment and the hospital and such, I would also need traveling expenses and money to live on as well. It would also mean that dad wouldn’t be able to work and therefore, the limited income that we are receiving nowadays wouldn’t be able to happen. So… it would really not be such an easy answer to just go away to another hospital, but we would have no other choice because the local hospitals in New York really can’t handle me because I am “too complicated.”
When I need to go to a hospital, it really is a BIG deal. I can’t just go to any hospital because of the nature of my complicated condition. I am waiting to hear from the surgeon for the osteonecrosis because I need to have that surgery done as soon as possible as it is really getting worse. In addition to all the other problems that I have with eating and such, the osteonecrosis that is occurring especially in my mouth is preventing me from eating on top of it too because even the very limited food that I can eat because of the Gastroparesis and such is all too painful because of the osteonecrosis. I am really between a rock and a hard plate because if it isn’t the Gastroparesis, which is preventing me from eating, it is the osteonecrosis. My GI tract is completely paralyzed and I can barely swallow. Even the limited foods that I once was able to have such as the ice-cream, the medicated ice-pops, and my egg-whites are giving me trouble now because not only is the Gastroparesis getting worse as well, but the osteonecrosis is causing severe pain as well when trying to eat anything. Anything that touches the mouth causes me severe pains… even my tongue. I literally have bones protruding into my mouth from my jawbone because of the osteonecrosis and they need to be taken care of as well as all the nerves in my teeth being exposed. Nothing is worse than having pain in your mouth and teeth because it shoots right up and down your face and up to your brain. Everytime I put anything in my mouth (even liquids), it feels like I am getting the worst brain-freeze in the world and the pain doesn’t dissipate as if it would as if it really was in fact truly “brain freeze.”
That being the case… I have been fortunate to be able to go for this necessary surgery in New York, but on the flip of the coin… the surgery is not covered. Therefore, I really need help in order to have this surgery performed because it is obviously going to be one expensive surgery since no surgery is ‘cheap.’ In addition, besides not being able to have the operation immediately because there are no funds available, the surgeon has been busy having meetings with all the doctors in the hospital and all the departments as well because the surgeon wants to make sure that the hospital is fully aware of my condition and what they are going to be “in” for when I arrive. They are going to have their hands full enough because I am not like a typical patient. The doctor doesn’t want any surprises. Therefore, not only does he want everyone who is on the team (from doctors to nurses) educated on my condition and familiar with it, but he also wants to make sure that they know exactly from head to toe what is happening with me. Therefore, he is having me get a lot of testing and clearances so that he can fully be aware of everything and anything that is taking place and going on.
I understand where he is coming from because he doesn’t want anything happening, but unfortunately with all this time being spent with seeing the specialists and going for the clearance testing, as well as him having those meetings… I am really deteriorating and getting worse. I already teased him and said to the surgeon “Do you think that I am going to be able to have this surgery before Christmas because it is right around the corner.” He assured me that they are trying to get it done as soon as possible and he has been working with the heads of each department in the hospital to make sure that I get in ASAP because he told them how severe my case is and how desperately I need to get this surgery done. After all, it is further preventing me from eating besides giving me even more pain, which is something that I can’t afford. I already weigh dangerously low and losing a single ounce is a matter of life and death. Also, if I do end up losing any weight, it is basically impossible to gain back and therefore, it is imperative that we don’t allow that to happen. So something has to be done quickly.
But also, as I said before, the surgery is also not covered under the insurance company and therefore, will have to pay for it out-of-pocket. So it is important that I have the funds available to pay for it when the window of opportunity opens up and there is an opening at the hospital for the surgery. It would stink to have everything taken care of and then when the “window of opportunity” arises, I would not be able to take advantage of it because of the fact that we don’t have the funds. It is important that this surgery be done because not only is it causing me severe pain, but it is leading to further infections and causing so many other problems, as well as spreading my other illnesses as well.
I should know more information on Monday because not only is the surgeon speaking with the heads of the departments then (especially with the head of anesthesiology), but I also have an appointment with my cardiologist and for an ECHO for clearance. So maybe we will have a set day on Monday!
I’ve also been more distended than anything lately and in a lot of pain with my stomach. Not only can’t I eat, but drinking is basically out of the question too. The slightest liquid entering my stomach is causing me severe distress. I don’t know if it has to do with my bloods or anything but I have never been so thirsty. Despite all the drinking that I do (even when I drink Gatorade or any other thirst-quencher drink), I can never quench my thirst. Plus… to make matters worse… I get severe pains in my stomach whenever I do drink. So I really am between a rock and a hard plate. I just don’t know what to do anymore because I suffer either way. I just can’t process the fluids and become severely distended, and the slightest liquid or food entering my stomach just kills me. That is why the doctors want me to stop eating and drinking. They think it is only compounding my problems and making them worse. Yet, in order for that to happen, I really need to have the tubes placed in me, which means I need to go to the hospital in California, Minnesota, or Washington… and you know the issues already with that.
I really need help and help desperately. I know I probably sound like a broken record already, but unfortunately that is the absolute truth. I really don’t know how much longer I can just stay out of the hospital “waiting” for something to happen. My bloods are continuing to worsen and they are never ‘bouncing’ up (even if it is just for a week or so). Despite all that I do such as taking my meds (even when they have been increased and such), nothing is working. It is like the more I try to improve my bloods and stuff, the worse they are getting.
My bloods are really low as I can easily have cardiac arrest and an arrhythmia. The hospital is always calling my doctor now saying that I am listed as “critical” when they test my blood. Not only is my heart suffering, but my other organs are suffering as well. I am showing signs of liver failure as well and I am having trouble clotting. My PTT (which affects clotting) keeps getting higher and doesn’t even come down anymore. The levels of the secretion of prolactin and other hormones of the pituitary are out of control because of the tumor that I have pressing on the pituitary gland. I know that if something isn’t done fast, I don’t know how much longer I can ‘hang on.’
I went for the flu vaccine today because I of course can’t afford to catch the flu. I can’t afford to catch even the simplest cold as it can easily kill me. I have no reserves and everything is ‘magnified’ for me over the typical person and therefore even the simplest cold is like the ‘flu’ to me and can easily kill me. Can you imagine if I got the flu? When I went to the doctor though, the doctor didn’t know if the flu shot would be a good idea because even though it would be a great idea in a normal person to prevent getting the flu, who knows what the best thing would be for me. I mean… if I get the flu, it would kill me hands down. But… if I got the flu vaccine, it could also cause mega damage because my body is so out of whack, so hypersensitive, so immune-compromised, and really in bad shape. I really have no power or capabilities to fight anything.
After careful thinking though, the doctor decided to give me the flu vaccine because getting the flu would probably be a lot worse. However, when I did go for it, it only led to tons of problems that made me end up staying with the doctor for almost the entire day today and almost caused me a trip in an ambulance to the emergency room.
I don’t know what is happening with my body, but this isn’t the first time this has happened. Lately whenever I get any vaccination, I have been having really bad reactions. I can’t just say it was the reaction to this particular vaccine because it happened the last time too when I had the Pneumonia Vaccine and Flu. However it was not as severe as it was this time. This time when it happened, it not only scared me but everyone else.
After the doctor gave me the injection, we thought that everything was going to be OK. We were joking around and even were saying how “its too late not to take back the injection because it’s done already!” We also thought that if anything was going to happen such as side effects to the injection, it would happen in a few days like it normally would for other people. We thought it would just be the typical side effects of feeling like I had the flu, but for me it would probably be a lot worse because of my condition. Never did we think that we were going to be in for what happened next though.
Within 5 minutes, things went from really bad. I started getting really bad chest pains as if I was having a heart attack. I was also getting really bad hot flashes and cold sweats. It was as if my autonomic dysfunction as acting up. I was also extremely dizzy and felt like I was going to puke. I thought it was just a sensation that was going to pass, but unfortunately it wasn’t. The doctor and his secretaries immediately saw how sick that I was and they said for me to go and sit down. Thank goodness I had them around because I got so dizzy and weak. I got really scared.
Thank goodness though that I have the best doctor and the best office staff. They are so kind and caring and really took great care of me. They kept making sure that I was ok. They kept checking my temperature, asking me if I wanted water, food, gum, or anything else, etc. They also helped me into a room to lay down because I was unable to hold up my head. I really wouldn’t have been able to manage without them. To think… this appointment was only supposed to be for bloods and the flu shot. I should have only been there for like 15 minutes or so. I ended up being there for like over 3 hours.
The doctor doesn’t know what happened. He thinks my body is just so deteriorated already and so compromised that the vaccines are just further worsening everything. After about 3 hours, my dad took me home, but I was in no way out of the woods. Not only did I feel horrible still, but also everyone said I looked really bad. I just wanted to leave the doctor’s office though because I was there long enough. The doctor said that I should contact him later though and let him know how I am doing. That is one thing about my doctor and his staff. They are so incredibly nice and caring. Even though I was leaving, they still wanted me to contact them tonight via text just to update them. Not many people would do that.
Unfortunately though, the chest pains didn’t stop though when I got home. Instead, they continued on and I also got really achy and got the chills on top of everything else. I really was having a severe reaction. So everything is at a standstill right now. I am still not feeling well and the doctor said that he would prefer me really to go to the hospital because of all that is occurring. However, with the issues with the money and how not many people would know even what is going on anyway because of my complicated disease, I am trying to hold out as long as possible. I just feel really weak not and feel like I am getting flulike symptoms on top of everything else. If my body is having reactions now to vaccines on top of everything else, I wonder what else is next. I wonder how I am going to take future vaccines. It is like whenever I do anything to my body, I have to pay the pied piper.
When I spoke to the doctor later tonight, I told him that he can never be bored with having a patient like me. I also told him how I keep him on his toes because of how everything keeps happening with me. He certainly agreed with those statements. I really keep a doctor busy… that is for sure. I told the doctor that if only he could cure me or something. Whoever does do that will definitely be rich and famous. That is why so many doctors don’t want to let me go. They don’t want to lose the opportunity to be able to claim me as a “prize”. They want to be able to write me up in the journals.
Well… that appears to be everything that is happening with me. Yesterday was Halloween and I can tell that things are really getting bad because I wasn’t in the mood to celebrate the holiday like I used to. I did cut open the pumpkin and such, but it was mainly just to get the seeds out so that my family could eat them and such because that is the tradition and because you can only get these seeds once a year. Even though you can get pumpkin seeds to eat anytime in a store, they never taste the same as when you get them and cook them straight from the pumpkin. It is like when you go apple picking… nothing tastes the same as when you actually pick it right from the tree… even though the supermarkets claim that they are “fresh” and “picked straight from the tree.” So I didn’t want to disappoint my family, so I cut open the pumpkins just for them.
My friend also came over one day to cut open a pumpkin and we had a great time doing that. He said he hasn’t cut open a pumpkin in ages. I did have a good time not only being with a great friend, but carving the pumpkin with him too. We made him puking because I told him that this pumpkin represented exactly how I felt! We ended up taking some really great pictures too.
But now that Halloween is over, the holidays are just around the corner. I can’t believe that it is already November! Thanksgiving is like in 3 weeks and that means that Chanukah is then too since it is very early and Christmas is 1 month later. Gosh… it is coming faster than ever. I really don’t want anything but to get well. I really hope that I get my wish.
I have been listening lately to some music and came across a song that I truly fell in love with. It was a song sung by Kristen Chenoweth. I never knew that she made an album. I thought that she was just an actress who was on TV as well as the person who played the good witch in “Wicked.” However, I loved her CD. She had a song called “Fathers and Daughters” and I instantly fell in love with it because it not only sounded simply amazing, but it reminded me of my dad. It showed the special bond that a father has with his daughter. I love my dad and he would do anything for me. It hurts him so much that he can’t do anything to get me well. He works himself ragged just t try to help me as much as he can, but despite all that he does… it is not nearly enough. He is so tired and overworked and I am so scared that something is going to happen to him. If something would happen to him, I would never be able to forgive myself. He is the biggest reason why I am here today. He is not only my dad, but also my hero and very best friend. He is my biggest supporter. He always takes the greatest care of me and always tries to make me smile… even on the gloomiest of days. He constantly takes care of me and spends countless hours on my bed even when he is so tired. In fact, I got a picture of him passed out on my bed the other day of my turtle just watching him. My dad was supposed to be ‘watching’ me and instead he passed out and my turtle was watching him.
I wish that there was something that I could do to make his life better because he is the best dad and the greatest person in the world. He definitely doesn’t deserve this. My dad and I are so close and everyone says that if something happens to me, my dad would never be able to continue. They are probably right because he keeps bribing me to keeping me here. Even though he doesn’t want me to suffer, he doesn’t want to lose me. So he keeps telling me all the stuff that he isn’t going to do or isn’t going to be done if I am not here like how he is going to become so fat that they are going to have to open up the gates for him when he dies and I will not even recognize him because it is me who watches his diet (to a point). He also tells me how he isn’t going to take his medications either because I am the one who sets them up. I keep telling him that he will be fine without me, but he says that he won’t and will not be doing these things. He thinks that by bribing me with this stuff and such that it is going to get me to “stay” here longer. I feel so bad because I don’t have that control over what happens, and I tell him all the time that when I go it isn’t because I wanna leave him! Here is the link in case you want to check out the video to the song I am talking about: http://youtu.be/5l8XoV_vxX0!
Well…. Gonna get going. Not feeling too well. Just wanted to update you on the latest. Thanks again for supporting and encouraging me. I really appreciate it. Like I said though, I really need help in getting further treatments, medications, etc. and therefore, if you can please spread word and bring attention of my website, I would really appreciate it. If you can please think of any fundraising ideas, I would appreciate that too. You can email me at Femirsky@gmail.com. Until next time.