Please help SAVE MY LIFE!

September 29, 2013


Just figured that an update was needed because it has been awhile and so much has been happening.  I have wanted to write earlier and let you know all that is going on, but the truth of the matter is that I am getting incredibly worse and to be honest it has been ‘touch and go’ these last couple of days.

It hasn’t really been good these last few days.  I am not doing too well. So if this blog is a little mishmash… please bear with me because I really want to try explaining all that is happening, but I must alert you ahead of time that it is hard to write and my brain isn’t functioning at 100%.

To begin with… I am really doing horrible. I know how I am always saying how I am suffering, but to tell you the truth, the suffering has been worse than ever lately.  When my dad and the doctors say that I “really belong in a hospital,” they really are saying the absolute truth! However, I am still trying to push on and hold out because I don’t want to spend my last days in the hospital and die in the hospital, and I also have family pictures that I want to take tomorrow, which are so important to me.  I really want my parents to have something to remember me by in case something should happen, so these pictures are incredibly important.  They are being taken tomorrow, so I really don’t want anything to interfere or make me miss this opportunity.  I’ll explain more about them later.

1293049_10100907460473920_223129998_oBut first off, let me tell you that I am not doing too well.  I really belong in the hospital like I said before, but I am continuing to push forth and hoping I can make it without going.  After all, it isn’t like I can go to any hospital and it isn’t like we have the funds that to do this either.  I need massive treatment immediately and unfortunately, the treatment that I need is extremely costly and we cannot afford it by ourselves.  That is why we are really hoping that people like you will help to either donate or to at least help spread the word that “help” is desperately needed because without it, I am definitely not going to make it much longer.  I really need to get to a hospital like the Mayo Clinic or Stanford or even the out of the country coma so that I can receive the treatment I need to survive.  I need either the intensive ketamine coma immediately out of the country, or I at least need the multivisceral transplant, which I am now too sick to get and I need to get tubes placed in me in order to help get me strong enough and in a hurry so that I can get that transplant to save my life.  I need that transplant more than ever, but unfortunately, I am too sick now to get it and survive the transplant.  That is why they need me to go to a hospital such as the Mayo Clinic or Stanford so that I can get tubes and other treatments so that I will be able to get stronger and be able to get that lifesaving transplant.    But unfortunately, everything is extremely costly and we cannot afford it.  We cannot even afford the current ketamine comas/infusions and the medications that are just trying to keep me going currently.  We even had to stop the hyperbaric treatment because of lack of funds.  It is a shame that it all comes down to the green paper dollar because my life is hanging in the balance and I am literally hanging on a wire that is ready to snap.

I really belong in a hospital and to tell you the truth, the doctors really wanted to put me into the hospital this weekend.  My bloods are extremely low and I can go into cardiac arrest and have an arrhythmia at any moment.  They are the lowest they have ever been.  They are so low that the doctors said that I need “emergency treatment!” Yet, I am here at home hoping and praying that I am going to make it through this because I am a fighter because we cannot afford to go for the needed hospitalization and the needed treatments that need to be done because it isn’t so easy.  Due to my extremely medically complicated illness, I can’t just go to any hospital.  I have to go to a hospital that is able to handle me, which is Stanford Hospital in California or Mayo Clinic in Minnesota.  Hopkins might be an option, but it isn’t the greatest.

Something is definitely going on and we don’t know what.  I told the doctors that something was going on and when the bloods came back so low, I told them that they should have listened to me.  I knew something was wrong because I could just feel it.  We aren’t sure if the changing of one of my meds though contributed to this problem, but it was determined that I can’t really be changed from any of my meds until I get stronger because my body can’t handle these changes.

Besides everything that is happening, we decided to change one of my medications because I am really suffering in pain more than ever.  Even though it was still a ‘morphine’ drug, it was a different drug and probably had a different mechanism of being released.  Whatever the reason, the doctors think that the switch of the medicine caused my body to go into severe withdrawal and cause my body to shut down. When they switched me from one drug to the other, I gave everyone such a scare and it was determined that until I get stronger, nothing is going to change.

We thought it would have been ok because it was still morphine even though the current drug that I was taking was a once a day drug and the new drug that I was being placed on was twice a day.  However, like I said before, each drug is still different in the way it is delivered and such and with my extreme paralysis of my GI tract and the way I absorb medication, I probably couldn’t absorb the new medication in the same way as the old one.  Therefore, it contributed to severe withdrawal and really caused my entire body to shut down.  I am lucky that it didn’t kill me.  My parents said that they were never so scared for me.  Even I was scared!

I don’t know what happened or how much the switching of the drugs had to do with it, but I started to urinate frequently, which was out of the norm for me.  About 2 in the afternoon, I collapsed on the couch and my parents couldn’t wake me up basically until 8 AM the next morning.  I was going through extreme autonomic dysfunction, as I couldn’t regulate my body temperature.  I was going through nite sweats, freezing, etc.  I was having such out-of-body experiences and experiencing dreams that you wouldn’t believe.  Whenever they tried to wake me up, they were having an entirely difficult time doing so because they just couldn’t get me up.  They really thought I wasn’t going to make it or that something was going to definitely happen that night.  No one slept that night, as they kept checking on me.  We think the switching of the drug might have had something to do with it because when they did manage to get medicine into me about midnight, I went back to taking my old morphine instead of the new one.  Once the old medicine got back into my system, some things started to quiet down.  I was definitely certainly not out of the woods, but at least some things did quiet down to a point.

It really gave everyone a scare and made me wonder how I would ever come off of these drugs because I don’t want to be on these drugs for the rest of my life.  After all, I don’t want to be a ‘druggie’ all my life, you know?  My internist said that until I get stronger and get some weight on, my body can’t handle any of these changes whatsoever, and therefore, it cannot happen.  They think that because I am so sick, so low in weight, and my BMI is so very low, they think that I can’t tolerate the slightest change.  But they are hoping that once I get stronger, I will of course be able to tolerate these changes.

I was also getting intensive spasms throughout my entire body so I knew something else was going on.  When I was taken to the doctor, the doctor ran my bloods and it was determined that my bloods were tat their lowest point.  I really needed to be in the hospital, but like I said before, I really didn’t want to go for various reasons.  First, we really can’t afford it because I can’t just go to a local hospital and the treatment that I need is extremely expensive.  Second, I wanted to take my family photos that are being taken tomorrow.

1267533_10100909349243810_1025823146_oWe are taking family photos tomorrow and they are so important to me.  I really want these because if and when something happens to me, I want my family to have something to remember me by, I have really been looking forward to these pictures and I really didn’t want anything to ruin them.  I was fortunate for a great photographer to be so willing and generous to donate his time and talent to take our pictures and create lasting memories. To think… these are even the first time we are even having a family picture really formally taken.  I am definitely going to cherish these pictures forever and ever.

To get ready for these photos, they cut my hair and changed the appearance.  They like gave me a whole new look so that I can look ‘pretty.’ I was so fortunate to the Sorell Salon because they really went beyond the call of duty to extend a helping hand to me.  When I went there, they made my day there one amazing day, as I was treated to an amazing manicure along with getting my hair colored with an outstanding colorist and getting an outrageous haircut.  I really honestly ended up feeling ‘pretty’ for a change.  It was one great day!!

I can’t wait for the pictures to be taken tomorrow.  However, even though all that was done to ‘make me over’ and transform me, we really still needed to be ‘done’ the day of the photos.  So my mom and me are getting our makeup and hair done tomorrow so that we can get our pictures taken.  We never ever had anything like this before.  I can’t wait to see how the pictures come out.  Unfortunately we didn’t really have anything to wear though because we really don’t go out anywhere, so we are just going to wear something casual like jeans or something.  But it will still hopefully be nice.  The photographer is coming to my house first so that we can take pictures with my dog and then I believe we are going to head to the park.  Thank goodness that tomorrow is supposed to be a nice day. I am so excited and everyone is going to look so nice. Even my dog is going to look his best, as we gave him a bath today! I’ll def let you know how the pictures come out and of course post them once they are done.

To keep me going and hopefully keep me out of the hospital, my parents have been trying to pump me up as much as possible with my heart meds and constantly giving me Gatorade and my ice pops (which have my heart meds in them). A great friend even brought over a heart defibrillator/heart start machine to keep in the house in case my heart stops.  This way if there is an emergency we have the ‘paddles’ right there and hopefully my parents can restart my heart.  Gosh… you know things are really bad when you get all this type of equipment into the house!

On top of everything else, my osteonecrosis is also acting up.  As if I wasn’t in enough pain already, I felt something really bad and painful in my mouth.  When I looked inside I was shocked to see how bad my osteonecrosis had become.  My entire left side of my palate basically caved in and the entire jawbone is basically protruding through.  It really gave us a huge scare.  Dad is making an appointment with the surgeon hopefully for this upcoming week, but in the meantime, I feel like a shark because I have my teeth and then I have these sharp pieces of bone protruding out from everywhere on the side of the palate.  It is just horrible and I don’t know what is causing all this.

My stomach is getting a lot worse and it is getting extremely difficult to even eat anything.  I am getting a lot of blockages and I am very uncomfortable.  The doctors want me to stop eating and drinking permanently forever, but of course in order for that to happen I need that special procedure at the hospital to have the tubes put in me and the central line first.  So everything is really on the fence because we are at a standstill since the funds have basically ran out and it will be extremely difficult for dad to spend an extended amount of time with me at those hospitals and away from work especially when the bills are so high nowadays.  So I just continue to hope and pray for just a miracle.

Other than that… nothing else is really doing.  But then again… isn’t all this enough?  I am trying to still stay positive, but it is getting extremely difficult.  I got the new book by Stephen King called “Doctor Sleep,” which is supposed to be the sequel to the “The Shining.”  I loved that book and movie, so I am hoping that the sequel will be just as good.

Dad is hysterical because he just got the iPhone a little while ago.  He finally left the flip phone and joined the technological age.     It has been hilarious trying to get him used to learning and working the iPhone because he had no clue how to work the iPhone. He was making progress but then when I switched him and updated his software because they came out with iOS 7… All progress was lost. Before this now, he never even texted.  So you can’t even imagine how many times he does something to his phone and he has no idea what he does. He is like “Fallon… Help!  I hate this phone!!” As much as he loves this phone he hates it because it’s smarter than he is. Thank goodness it has Siri because all he has to do is talk to it and it does everything for him. So at least it makes it easier for him. Thank goodness because I don’t think he would’ve been able to even make a call if he couldn’t say ‘call’ and it then called that person. Lol. He one time even called me on FaceTime and he had no idea how to shut it off. It was hysterical. I had to literally walk him through it.

1268563_10100909347287730_1419700415_oWell… I guess that is about it.  I am going to rest because I got a big day tomorrow and I am in so much pain.  I can’t believe that it is already just about October already.  The year is just flying by and the holidays will be here in no time.  I just hope we aren’t in for a cold winter.  That would be horrendous.

Thanks again for supporting me and encouraging me.  I wouldn’t have made it this far without your support.  It is so nice to know that I have such kind people behind me.  Please continue your prayers and please continue to spread the word that HELP is needed because I desperately need it in order to save my life!  I can’t do it on my own!!

Well… talk to you soon!

– Fallon

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September 18, 2013


Now that I have finished my appointment in Washington DC, I finally have all the information that I need to share with you.  I am writing to you to not only inform you of all that is happening, but to let you know that I didn’t receive such “good” news on my trip to Washington DC so that I can go to the Georgetown Medical Center.

As I am rapidly deteriorating and suffer from rare life threatening illnesses, I proceeded to come to Georgetown in hopes that they would be able to have some answers and some ability to help me.  Since my entire body is shutting down, I am in need of a multivisceral transplant, which incorporates reeving a new stomach, small intestine, large intestine, and pancreas.  It is a very rare and risky and dangerous transplant, which only 6 hospitals in the country perform…. Georgetown being one of them.  This transplant is considered the most dangerous of all transplants and only about 100 of them are done per year.  But when your entire GI system has shut down and you only weigh in the 60s, you really don’t have a choice.

I am rapidly deteriorating and that is why I came to Georgetown. I came in search of hope that they would be able to save my life because I am really not doing so well.  In fact, I really must say that I am doing worse than ever.  Not only is the pain totally out of control and I suffer every minute of the day and never get a break, but I cannot eat, go to the bathroom, or even function.  Like I said before… I only weigh in the 60s and I am basically having my body shut down organ by organ.  I have a BMI that is totally unheard of and it is a miracle that I am still alive.

1269200_10100898428059950_589993047_oI need desperate help.  When I met with the doctors at Georgetown, they agreed that I needed help ASAP.  When I saw the transplant team, they agreed that I needed a transplant as soon as possible. However, it has gotten to the point though that I am currently too sick to survive the transplant and therefore, they said that they have to “improve my chances” if I am going to get the transplant. It really stinks because without the transplant I will die, but I can’t get the transplant because I am too sick currently to get it.

I couldn’t believe the news that I received because I am at the point where decisions really need to be made.  The doctors literally said, “I’m hanging on by a rope and I’m literally going to die.”  They told me that am extremely fearful for my life and how the simplest thing can kill me.  The simplest operation or the simplest cold can easily kill me according to the doctors.  Therefore, they said ball is in my ballpark, as I need to make a decision as to whether I want to hang on and ‘try’ or just call a ‘quits’ and give up. I do know that I came this far and I really do want to get better.  So since I hung on this long, I told the doctors that I am planning on holding on for the long haul… at least for now.  I just don’t know how long I can make it because my body is just breaking down and I really need something to be done.

However, the doctors said that if I were to have the transplant right now, I would be dead within a week because I am not strong enough to survive the operation or the immunosuppressant drugs that need to be taken afterwards. They told me that the immunosuppressant drugs can take someone that is healthy down, but in my case… it will easily kill me.   On the other hand though, we really need something to be done because my body is really giving out.

My body has been really doing things that I never have experienced. According to the doctors, the reason why I am having all these new severe problems more than ever such as the severe edema in my legs (even when elevated), the fluid in my lungs, the night sweats, the extremely low body temperature, etc., is because my body is shutting down.  They said that my heart is at the point where it is now suffering on top of everything else and besides my whole entire body and organs shutting down, my heart is now shutting down as well.  Therefore, if something isn’t done quickly, they are fearful that something is going to happen to me because like I just said… my heart is suffering tremendously now.

My heart is now at the stage where it is suffering more than ever right now and it is at the point where it is shutting down. All the nutrients and survival mechanisms that my body has is going to my heart to try to keep it going.  Therefore, my entire body is just simply breaking down and failing me faster than ever.  They said that is why I am getting the edema and the extremely low body temperature and can’t regulate body temperature, etc.  In fact, lately I have been having a hard time regulating my body temperature as I go from not being able to warm up to suffering from severe hot flashes.  However, when the doctors took my temperature today at the hospital, they literally freaked out because my body temperature was only reading a maximum of 95 degrees, which is basically unheard of.

The doctors said that I was the sickest patient that they have ever seen in their lives.  Not only was I suffering from an unbelievably low body temperature, but also my weight and BMI is basically unheard of.  They said it was a miracle that I am still alive. They said that I am in the extreme dangerous zone and unless something is done soon… I am going to be up the creek.  They did agree that I needed the transplant like I said, but they said I would never survive it because within 1 week I would be dead. Therefore, they said that the first thing that must be done is that I must be placed again on TPN.  I have been on TPN in the past twice and unfortunately it has failed me.  However, even though it hasn’t worked and has only given me complications, I must have it done again because it is crucial that I gain weight and get stronger prior to the transplant.  They want to put like 25-30 pounds on me prior to the transplant.

In addition, they see how sick my GI system really is, as my entire GI system is paralyzed.  They see that the slightest food and drink will send my system into extreme havoc.  It will cause so many problems such as extreme pain and bloating.  Therefore, they said that they do not want me to eat or drink ever again.  They said that my organs are basically “done!”

I can’t believe that I am 31 years old and my organs are basically done, and the doctors are telling me never to eat or drink again?  This is just one more reason why TPN is needed because of course you can’t stop eating and drinking without being on it.

I have had TPN in the past and it has failed me.  However, the doctors told me that when I had the TPN restarted again, it would only be at a rate of giving me of like 300 calories a day (if that much).  I know that doesn’t sound like a lot and it sounds really impossible for someone to survive on that amount, but the doctors insist that they are starting me out on this level for two reasons.  First, they need to start out really slow because it could really cause more harm than good and do more damage than anything else if you start out too fast.  Secondly, the doctors insisted that I am only probably absorbing that amount currently now anyway.  They said that even though I might be eating more than that, I am not ‘absorbing.’  Nothing is being processed or absorbed, but rather just ‘sitting’ in my GI system and rotting.

Therefore we now have to make plans ASAP to get this TPN done because time is of the essence.  I need the TPN because not only do I need it so that I can get it so that I can get the transplant, but I need it because my body is shutting down and because it is really shutting down my heart now as well, which is the most important organ of them all.  So now everything is chaotic because we need to find the right hospital to have this procedure done because it isn’t so simple to have done because the hospital has to be able to be able to deal with the TPN, my medical history, my illnesses, and able to give me ketamine.  Not many hospitals are able to deal with my complicated medical condition and able to give me ketamine around the clock as well.

Since there are very few hospitals that can handle me, I will probably end up at the Mayo Clinic in Minnesota or the Stanford Medical Center in California.  However, even though these hospitals might be the best for me, it will also be a hardship for us because they aren’t located exactly ‘locally’ and therefore it will be extremely expensive as well because it will force my dad to have to take more time away from work, which means no income coming in to pay the bills. We also have to worry about not only paying the bills, but the traveling expenses as well.  So, we really need as much help from others as possible so that I will be able to get the appropriate treatment that I need. It really stinks that when it comes down to it… it always comes down to focusing around money.

In addition, the doctors said that I need not only to get the TPN in place as soon as possible, but I also have to get the obstruction/twist in my colon taken care of as well. However, it is a catch-22 because unfortunately it is a “no win” situation with that because I emergency surgery because of the twist in the colon/obstruction in the colon as I can literally die from it.  However, it is extremely dangerous and life threatening for me to go for any operation because even the most simplest operation can kill me as well.  So I am really at jeopardy if I leave the obstruction or take it out.  I can’t leave it because it can kill me and yet if I have the operation… they are extremely weary that I won’t survive the operation.  After all, they even said that even if I get a simple cold, I probably won’t survive.

So… everything is just so chaotic right now and I have no idea what is going on.  We really have to make decisions though and make them quickly because time is of the essence.  I am really scared and I really don’t want to die.  But I don’t know what is going to happen because I don’t know if there is going to be a light at the end of the tunnel.

When we met with the team of doctors, they not only spoke with us and examined me, but they also took pictures of me.  They said that they liked to keep photos to document everything and so that they can record everything.  They also told me that they were also extremely glad that they finally got to meet me because they said that they have been so very busy these past couple of weeks reading all about me because I had a volume of records for them to read.  They said, “It was finally nice to meet the celebrity because we have learned about you for so long!”

1277417_10100899138665890_1102313281_oIn the meantime… we have had an interesting time in Washington DC.  I always have a great time when I am with my dad.  My dad always tries to make sure that even though I am sick and we are traveling for “medical” reasons, he always tries to make sure that I have as good enough time as I can.  He always tries to put a smile on my face no matter how bad things may look.  When we go away… it is always an experience.  We have so many great experiences together.  Not only do I get to experience some great things with my dad, but also I get to be with my dad and further bond with him.  I am so lucky to have my dad as my dad.  He is not only my dad, but also my hero and very best friend. If I didn’t have him in my life, I certainly wouldn’t be here today.  He certainly is the main reason why I continue to push on.  People say that if something should happen to me, my dad would never survive.  There is nothing that my dad wouldn’t do for me, as he tries to do anything in his powers to get me well, and it absolutely kills him that he can’t make me “well” and take this all away.

This was the first time my dad was ever in Washington D.C.  I have been here in the past on school trips, but I don’t really remember much and it was many years ago.  Plus… it is totally different going with school and then going on your own. So basically my dad and I were two lost souls in a huge bustling city.  To start our trip off … we happened to arrive right after there was a shooting at the U.S. Naval Yard.  Thankfully we arrived at the Baltimore Airport because all the other airports in Washington had their planes ‘grounded.’  We didn’t even know what was happening, but when we were waiting to depart from New York, I was receiving texts from friends alerting me to the situation.  We couldn’t believe that there was a huge shooting occurring at the U.S. Naval Yard, which was literally 2 miles away from where we were going.

1276925_10100898426992090_370256303_oThank goodness by the time we arrived that things quieted down.  We thought that it was going to be really bad with traffic and everything, but it wasn’t that bad.  It was certainly an interesting day though because that night we kept watching the helicopters keep circling and flying over the Naval Yard, which was right by the Washington Memorial.  It was definitely an experience.  Of course since we were right in the center of the action, it was all that was on the television.

Our hotel was in an extremely great location because it seemed to be in the center of everything.  It was basically located right next to the White House and when you looked down the street, you could actually see the capital.  In addition, when you looked out the window of the hotel, you could see Washington’s Monument, Lincoln’s Monument, and Jefferson’s Monument.  It really was great because since I couldn’t really ‘sightsee’ because I couldn’t really move because I was too ‘sick,’ I was still able to see a lot.  I was really glad that I got to show my dad so much even though we only got to see them at distances.

1273866_10100898425006070_645285330_oAfter resting awhile in the room because I was very sick from the trip, as it takes a lot out of me to travel, we decided to go for a little walk.  Like I said, our hotel was located in a great location and there were plenty to see in the area.  In fact, when we went for a little walk, we saw a white building that was blocked off and gated about two blocks away from the hotel.  When we saw the building, my dad originally told me that it was the White House.  However, I wasn’t quite sure that he was right because it didn’t look too extravagant. Yet, he told me it was probably because it was the ‘back’ or something.  So we took pictures and really thought that we had saw the White House as of that day.  It wasn’t until the very next day that we realized that we were wrong.

1264150_10100898427401270_1108424141_oThe next day we were going to the White House to meet a friend that I grew up with.  I haven’t seen this friend since High School and I was so fortunate that she was willing to meet me and show me around the White House and such. It was so great to see her because I haven’t seen her in so many years.  She has the best job! She actually is a lawyer who works in the White House for the President.  So, besides getting to see her, we were fortunate that she was willing to give us access into the White House because I never have been in the White House and it was something that I always wanted to do.  They stopped doing tours because of budget cuts, but thankfully I was able to get a tour because of my friend.

1231501_10100898426443190_1676674005_n-1My friend wanted to meet up at a specific location.  However, it wasn’t until we met her that we realized that the original “White House” that we went to the day before was actually the U.S. Treasury.  When we went there first because we thought that it was the White House, we then saw that it was actually not the White House and the U.S. Treasury instead.  I can’t believe how I believed my dad on this. My dad even took out his money and said “Oh yeah… it does look like the building on the money!”  In fact… when we did get to the actual TRUE White House his response to it was “Now this is the White House because this House is the Whitest of all the houses even though they are all white.”  I can only laugh at things my dad says.

893252_10100899141779650_1356975161_oIt was great to meet up with my friend. What a great overall experience it was to actually get into the White House.  It was only appropriate that we went to the White House today because today was known as CONSTITUTION DAY.   We all got ID tags to wear and I only wish that I was able to keep it.  It would have been a great souvenir, but of course I had to hand it back.

Security to get inside was also very intense.  Not only were there the ID checks twice and the metal detectors, but they also had an area where you stood and drug dogs sniff you. Of course when it was my turn and the dog sniffed me, the dog kinda went a little crazy. Gee I wonder why… could it be because I am on so many drugs?  I am like a little druggie with all the drugs that I take… the ketamine, morphine, methadone, dilaudid, etc.  No wonder the dog kinda went crazy with me!

I got to see things that I never knew existed inside.  This was definitely something I will never forget. For one thing… I would never think that the people that worked for him would have their won gym.  I really wanted to get a picture of it, but never got a chance. I guess with all the hours they put in….They need it to relieve all the stress.
858837_10100899206190570_1812111968_oI also got to go into the Vice President’s wing and office.  Unfortunately I didn’t get to spend long though because they said that they were expecting Biden’s arrival at any moment.  I can’t believe that we just missed the Vice President. I only wish he would’ve arrived while we were there. I tried to walk out slowly to see if we could catch a glimpse of him, but of course he never showed up. There are so many entrances also into the area, he could have came in through any of the entrances even though I thought the would probably come through the entrance we were walking out of.

736113_10100899202502960_1258986116_o 1276341_10100899517421860_1898558532_oMy friend also managed to give my dad and me official M&Ms from the White House.  They are really cool.  They are in boxes that are stamped with the presidential seal on one side of the box and an M&M holding an American flag on the other.  In addition, the M&Ms are red, white, and blue.  I think they are so special and cool. I don’t know if I want to eat them or save them.  They are something that no one else has.

1232984_10100899122802680_1837826096_oI really had an amazing time at the White House.  When we were leaving, I of course had to stop at one of the souvenir shops right outside.  I wanted to get my mom a souvenir because she wasn’t able to come with us.  I also wanted to get BO, which is the Obama’s dog.  So I got myself the big Bo and I got my mom the little Bo.  I also kept telling my mom how I was going to take a pen off the president’s desk when I went inside, so I bought her a pen while I was there as well.  I was going to pretend that I got it off his desk for her.

1262733_10100899201315340_1320277002_oAt this particular gift shop, you were able to take pictures of either standing behind the presidential podium or sitting behind the president’s desk in the Oval office.  Of course it wasn’t ‘real’ but it looked just like it and I thought it was a really neat idea. So I took the picture behind the podium as the being the future President, and my dad took the picture behind the desk as being the current President.

Well… I guess that appears to be all.  I think I wrote a lot. I am leaving tomorrow to go home but like I said in the beginning, we really have a lot to plan and think of because time is of the essence and I really don’t have a lot of time left.  I really need all the support and prayers I can get because everything is touch and go right now.  I want to definitely thank you all for being behind me and supporting me.  Please continue to spread the word of my website because donations are definitely needed and are extremely appreciated.  Until Next time…




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September 15, 2013


I just wanted to share a bit what has been happening especially since I am leaving in the morning for Washington D.C.  I am not doing so well and rapidly deteriorating.  I know this blog might be mumble jumble, but please bear with me because even though I am deteriorating and suffering, I want to make sure that you are aware of what is happening.

The most major news is that I am leaving tomorrow for Washington D.C.  It isn’t going to be a long trip, but my father and I have to go because we have to meet with the transplant team at Georgetown hospital.  Like I have told you before, I am really sick and I my entire GI system is literally ‘dead.’  Therefore, I need a multivisceral organ transplant, which is extremely rare and risky, and only like 6 hospitals in the country actually perform.  I need a new stomach, small and large intestine, pancreas, and liver.  The survival rate is not so great, as it is the most dangerous and riskiest transplant you can ever have. But when you are down to weighing in the 60s and basically going to die without it, what other choice do you have than to go and go through with it?  After all, I can’t eat, absorb, etc.

Originally we wanted to have the transplant team in California at Stanford Hospital perform the transplant.  However, there were a lot of problems arising and as a result, we thought maybe by going to Georgetown, it would solve a lot of the problems.

This transplant is extremely expensive, as it will cost over hundreds of thousands of dollars.  Even with the insurance covering whatever they will cover, the cost that we will have to contribute will be so astronomical.  Besides the actual cost of the actual transplant operation, we have to worry about relocating to a closer area to Georgetown because I will need to be in the hospital for at least 3 months.  This will also mean that my dad will not be able to work as well, which will cause additional problems.  The traveling expenses for the transplant will be astronomical because there are so many times I am going to have to travel back and forth to the hospital and like I said before, I have to worry about the relocation cost as well.  In addition, I also have not only the cost of the actual operation, but I will have to take anti-rejection meds the rest of my life, which will be extremely expensive.  That cost alone will be at least $5000 in itself.  So, it is really important that I get as much help and donations as possible because I don’t know how we are going to be able to afford all this otherwise.  My life is literally hanging on the clothesline out to dry.

In the meantime, I have to meet with the transplant team.  Even though I am ‘listed’ as in need of a transplant, there is so much testing and meetings that you have to do in order to be officially listed and prior to getting the transplant.  At any time during this process, the team can deny you and say that they will not be doing it… even if they know deep down that you are really sick and going to die without it.  So we are really hoping that all goes well when go to Georgetown because like I said before… they can back out and not do the transplant anytime even though they know that you desperately need it.  After all, the transplant is so dangerous and risky and the survival rate is not that good.  They say that the key is to be ‘sick enough to warrant the transplant but well enough to be able to come through the operation and recover!’  So it is kinda like a catch-22.  So all we can do is cross our fingers and hope.  We just know that it has to be done as soon as possible because the longer that we wait, the weaker and worse I am getting.

The trip to Washington DC is definitely going to be interesting. I have been there in the past because of school trips, but this will be the very first time my dad will have ever been in Washington before.  Can you imagine being 60 years old and never being in the state where your head of the country resides?  Washington is one amazing place and it is really something that a person must experience at least once in their lifetime.  I am so lucky and fortunate that my dad will be able to experience his first time with me.  Even though we probably won’t get to do a lot because of how sick I am…. I am hoping to at least do some things because Washington is such an amazing experience.

Unfortunately our flight will be arriving into Baltimore, which is one of the three major airports in the area but it is also the furthest of the airports that we need.  However, we are traveling Southwest and when we checked, there are no flights leaving the New York area and going into the closer airports. So, we are stuck going to Baltimore airport, which is like 1 hr. away from Washington D.C., which is really annoying because it means that we really need to take a car service to get to Washington, which is extremely expensive.  I can’t believe that they want over $100 each way, but we really don’t have a choice.

The hotel that we are staying at happens to be right next to the White House.  I am really psyched because the White House is at 1600 Pennsylvania Avenue and we are located at 1400.  After speaking to the manager, we are supposed to be having a room that overlooks Pennsylvania Avenue, which will overlook the Capital as well as Washington’s Monument.  Of course I am not going to count my chickens before they hatch because when I am in the room to actually see the view… then I will believe it.  I am really hoping that I have this view, but I am not going to build up my hopes so that I can be disappointed.  I really hope that I have this view though because even if we don’t get to go out to do any sightseeing, at least I will have gotten to see these amazing buildings.  Actually, to tell you the truth… I have been to almost all the monuments in DC during past school trips, but I have never ever been to the Washington Monument or the new monument that was just built for World War II.  They are two monuments that I would love to see.

However, I am really excited because I am supposed to be going inside the White House.  I have a very dear friend from high school that is fortunate to be able to have a job inside the White House and she was very nice enough to offer us a tour of the West Wing, as well as where she works.  I haven’t seen her in ages… in fact it has been like over 10 years, and it will be great to see her!!  I also can’t wait to go into the White House because that is something that I always wanted to do as well.  The West Wing, which is where I will be touring, is also known as the “Executive Office Building.”  It houses the offices of the President of the United States, as well as contains the Oval Office, the Cabinet Room, the Situation Room, and the Roosevelt Room. This is going to be one amazing experience that I will cherish and remember forever.  I will tell you all about it after we go.  We had to be cleared by Secret Service and everything. I am just super excited.

Tuesday will be such a busy day because that is the day that we are supposed to be going to see my friend and the White House in the morning. It is also the day that we have the appointment at the hospital in Georgetown. Since Washington D.C. is so busy and the traffic is so bad, we decided that taking the Metro would probably be the best bet in getting around the city and traveling to the hospital.  I really hope that the location of the Metro isn’t too far from the hotel because I don’t know how far I will be able to walk.  When we spoke to the hotel, they said that it is fairly close, but “fairly close” to them might not be the same to me.  I guess this will definitely be an experience for everything considering it is the first time we are encountering all this.

The trip to Washington is hopefully going to be brief because we are just meeting with the transplant team for another meeting.  So hopefully we will be home Wednesday.  It stinks that I have to do all this traveling… especially in the condition that I am in because I am really in no traveling condition, but unfortunately this is the protocol.  You have to make these ‘meetings’ with the transplant team to ‘talk’ with them. So I guess there just isn’t any choice.  I guess they want to do everything face to face because it is so complicated and dangerous.  I guess they want to make for 100% certainty that everyone is on the same page.  So I guess I can’t really blame them.  It just stinks that I have to travel back and forth because I am so very sick and not really in traveling condition and plus it is also expensive to do this as well, which is something that we don’t really have the added funds for.  That is another reason why donations are much needed… there are multiple trips to the transplant center that are needed even before the transplant is performed.

My parents are extremely worried that something is going to happen to me during this trip because I am not in the shape to actually travel.  I am really deteriorating and weakening.  My bloods have gotten a lot worse and so has the obstruction.  In addition, they are worried that I might be ‘drowning’ in my fluids because I am aspirating worse than ever and I am having severe swelling in my legs… even when they are elevated.  I have such severe edema in my legs and feet that fingerprints can be made.  I am so worried that something is really going wrong with my heart because not only am I filling up with fluids in my lungs, but also my bloods are not good either.  My bloods are continuing to drop, as they just don’t come back with ‘low’ values anymore but they are stated as ‘critical.’  I am extremely at risk of having an arrhythmia or cardiac arrest because of how my bloods are.  In addition, my clotting factor is also elevated, which means that I am also having a difficult time clotting.  I am just one complete mess.

As my dad says… I belong in a hospital.  I really don’t disagree with him. I really do believe that I do.  I know that something bad is happening in my body.  I can feel it.  I know that my body is dying off.  I can feel it. But I am still pushing onward and hoping that these feelings are wrong. I am hoping for a cure and hoping for better days.  I am hoping that one day I will get better and hoping that I will get back the life that I was robbed of.  I am hoping that I will be able to live the life that I dream of every day… the life where I get to walk, eat, have a husband with kids, be a doctor, be able to swim, be able to lay in the sun, be able to be touched, etc.  It just isn’t fair that I am 31 years old and my life has resulted to this.  I feel like a prisoner in my own body and that I am living in Hell everyday because I am suffering so very much.  There is not a second that goes by that I am not suffering.  In fact, they even had to raise my medications and add more because the medications weren’t holding me.  Living on over 50 pills just to make it through a day is not a way to live.  Someone should not have to live on Morphine, Dilaudid, Ketamine, Nucynta, Vicodin, etc. just to make it through the day. It just isn’t right.

I know that the obstruction is also getting worse.  The doctors want me to go for a CT scan, but once I go for that and it is determined that the obstruction is worse, I will have no other choice than to go for the major operation. They are thinking that because of my extreme paralysis of my GI system and overall condition, my colon has twisted because of all the air that is in me.  After all, I am completely full of air and I am extremely bloated and distended.  In fact, I am so full of air that I am really uncomfortable. I walk around wanting someone to ‘pop’ me. I feel like I am 9 months pregnant and ready to give birth.  There used to be a time that I would be able to be able to manipulate the air out of my system by maneuvering it throughout by use of my hands since my GI system really was too paralyzed to do it on its own, but it is now at the point where it is too ‘dead’ for even that to happen.  NO matter what manipulating I do or how many gas pills or Rolaids or anything else I do… it just doesn’t get better.  I literally walk around looking like I need to be deflated and popped.

I am really hesitant to go for that because of various reasons.  First, it is extremely risky and dangerous.  The doctors are so scared that I am going to die just if someone breathes on me because I am so weak at this point.  They said that even the simplest operation would be extremely life-threatening to me… especially something like this.  Second of all, I really don’t want a bag.  I know it sounds stupid, but with everything else that I am dealing with, I am tired of being treated like a guinea pig and like I am not human.  I am constantly being poked and prodded and I really just want to feel ‘normal.’  I really honestly don’t want the bag. Finally, another reason I don’t want the operation is the same reason why I am not in the hospital when I really should be in the hospital right now.  The reason is that since there really is no local hospital that can treat me, I would have to travel to a hospital that is not located around my house. We really don’t have the funds to do this because it would mean traveling expenses, my dad staying in a hotel, etc.  It would also mean my dad missing a significant time away from work, which is something we definitely can’t afford right now either.  We are having enough of a hard time trying to afford the treatments that I need and pay the current bills. I can’t even get all the treatment that I need and he is working.  If he didn’t work, there would be no way I would be able to receive ANY treatment.  That is just another reason why donations are so important.  My treatment is so expensive and without the help of others, I will not be able to continue the very lifesaving treatment that I need.

IMG_9630One treatment that I actually had to stop was the hyperbaric oxygen treatment because it really got too expensive. My treatment is so expensive and the money that my dad makes and the limited donations that I am receiving can only go so far.  Therefore, we had to make drastic cuts and as a result, we unfortunately had to make a cut in the hyperbaric oxygen treatment.  It is a shame too because that was one treatment that was working.  It was working in various ways because it was not only bringing oxygen to my necrotic tissues and was preventing amputation, but it was also helping my GI issues because when I underwent the treatment, it would help with the distension and belly pains.  It probably was doing other things as well, but these were 2 of the issues I definitely noticed that were definitely improved and helped with the hyperbaric oxygen.  It is a shame though that the insurance won’t cover it and it is too expensive to continue paying out-of-pocket. I only wish I would be able to receive enough donations so that I would be able to continue going for this treatment because like I said… it was helping and I would do anything for help.  But unfortunately going for a treatment here and there for hyperbaric won’t help. It only helps when they are cumulative and therefore, I really have to undergo like 3 treatments at least a week, which is definitely not possible with the funds that I have.

I am very worried about my dad because he is so overworked.  There is nothing that he wouldn’t do because he would do anything to try to get me well, but I am so scared that something is going to happen to him. After all, he is no youngster and he is working so many hours and barely getting any sleep. He is up at 3 AM, out of the house by 4 AM and doesn’t come home until 7 PM.  By the time he finishes taking care of me, he doesn’t really sleep except for maybe 3-4 hours a day.  His work is also all-physical and he doesn’t even get a break, as he works basically 7 days a week.  My dad is not only my dad, but also my best friend and hero.  If it wasn’t for him, I definitely wouldn’t be here today.  If something happened to him, I would never forgive myself.  I just wish he didn’t have to work so hard because I don’t know how much more he can honestly take.  He looks like he is ready to drop dead and he is so grouchy all the time.  I can’t blame him because he is just soooo tired. He would do anything to get me well.  The worst part is my dad having to watch me suffer and deteriorate the way that I am and knowing that his hands are basically tied.  He is also trying to make do with all the bills and try to get me all the treatments that I need, which isn’t in his powers.  It really kills him that I am suffering like this.  Everyone knows that if something happened to me, he would never recover!

So that appears all that is happening.  I am just trying to hang in there.  Like I said before… things are getting worse, but I am trying to hang in there and still hoping that things will turn around.  I am getting really worried though because not only are my bloods dropping further and I am aspirating more (so I feel like I am drowning in my fluids), but the swelling in my legs is really scaring me.  I never saw my legs and feet so filled with edema.  I really don’t know what to make of it.  I also can’t go to the bathroom at all, so we know that the obstruction is definitely getting worse.

All I know is that I need help and unfortunately I won’t be able to receive the necessary help that I need without your help.  I am really fortunate and grateful to all those that have stepped up to the plate and helped out in whatever ways that they could… even if it was to spread awareness and bring attention to my site. After all, even the littlest donation is money that I don’t have to come up with and extremely helpful and the more people that are knowledgeable about my website and illness, the more chances I have of being helped.  I really hope that maybe the media will get whim of this and maybe can help.  I really hope that maybe people like Ellen DeGeneres or other Talk Show people might be able to help me because not only would I love to meet them and be able to receive help for myself, but I would love to have other people learn from what I am going through and to show others that even if they are given a hard life, they shouldn’t give up and it isn’t the end of the world.  I want to show people that they shouldn’t take anything for granted and how you can overcome anything even this.  I really want to bring attention to a disease and illness that no one knows about.  I really want to make an everlasting mark in the world and if I can’t really help myself, I at least want to help others so that they don’t have to suffer the same fate as me.

I also want to let you know that there was an article recently written about me online.  It can be viewed at the following link.  http://sincerelyunmoved.blogspot.com/2013/09/fallon-mirsky-girl-looking-for-miracle.html  Please feel free to spread the word of this link because like I said before… the more people that know about it, the better I am.

IMG_9840I had to recently get new glasses because my glasses ended up breaking. It really stinks when I have to get new glasses because they come out to so much money.  It isn’t like I get such an expensive frame either.  In fact, it isn’t the frame that costs me so much money, but it is actually the lenses because my prescription is so complicated.  I have to wear progressive lenses and besides all that, I have to have very intensive prisms put into the lenses as well.  It is the prisms that makes them so expensive.  I am really fortunate for the new technology though because they are able to make the lenses really slender.  Otherwise, the heavy prisms would have forced the lenses to be extremely thick and to really unattractive.  In eyeglasses, prisms are used primarily for double vision, positional correction, or convergence correction.  Prism lenses are necessary to aid in getting the eyes to work together. One or both eyes tend to pull up, down, to the left, or to the right. The use of prism in the lenses tricks the brain into thinking the eyes are working together by shifting the image only slightly up, down, left, or right.  Prisms are different than standard lenses because Standard eyeglasses usually correct two types of eyesight errors, or a combination of both:  focal distance (near or farsightedness), or unusual curving of the cornea (astigmatism and cylinder).

At least now I can still look ‘pretty’ even though I have to wear them.  It really stinks to have to wear the prisms because it literally makes the lenses cost like $1000.  With my illness, my eyes are constantly being affected and eyesight is constantly changing.  So it is really hard to constantly get new glasses and be able to see because of the cost of them.  But with your ‘sight,’ the world is nothing.  I always said that if I had to lose something, ‘seeing’ would be the very last thing I would want to lose.  So… that is just one more added expense that I had to worry about.

I am really picky when it comes to glasses to because of what my face looks like.  I am extremely thin and have no muscle mass left basically.  Therefore, I really don’t like how my face kinda just ‘sags’ and gets lines because there really is no ‘muscle’ or ‘tone’ left in my face.  That is why when I take pictures… I try to airbrush them as much as possible because I hate those lines.  Anyway, when I get glasses, I literally try on every pair to try to see which pair hides those lines the most.  I hate glasses that make my face too small and thin.  I think I finally found a pair though that like.  I also fell in love with a pair of sunglasses, but since the lenses are so much money like I said before, I can’t afford to get both so of course I didn’t get the sunglasses.  I only went with the priority pair, which was the eyeglasses.  I can’t wait to get them.  I was hoping to have them by the time I left for my trip, but with my prescription, it literally takes weeks for them to be made; it usually takes about 2-3 weeks because they are so complicated.  So I guess I will have them when I return.

Well, I guess that is about it.  Wanna hear something funny?  You know how the new iPhone is coming out Friday?  Just when they announced that you could pre-order the iPhone that is being released, which was this past Friday, my cell phone ended up dying.  I couldn’t believe it.  I actually woke up and the whole entire screen was all messed up with the pixels and everything.  It was completely broken and I definitely needed a new phone. What timing this was!!  However, it had to happen one week short of the new iPhone being released, right?  However, since I obviously couldn’t wait an extra week for the new iPhone to be released, I obviously was stuck getting the older model.  All I kept saying was “why couldn’t this happen one week later and I could have taken advantage of my upgrade then?”  But after speaking to the APPLE people, they told me that they have a 14 day policy and therefore, I can return it during time.  So I am hoping to be able to exchange it for the new one next week when it comes out.  I just can’t believe that my phone had to break the day that you were able to pre-order the new one.  It should have broke the day the new one was actually released instead.

I am still in the process of reading my current James Patterson book called “Second Honeymoon!”  However, I am waiting to get Stephen King’s new book called “Doctor Sleep.”  It is supposed to be the sequel to “The Shining” and I just loved that book and movie.  There are a lot of good books coming out this month.  I guess this is the month for good books and returning TV shows.  But as for DVDs being released… that is another story.  I haven’t really found any good movies really being released this month.  It is probably because of all the holidays that have been occurring because I discovered that when there is a holiday during a particular week, they really don’t release good movies during that week.

On a better note, my brother has been trying to get the grass in the backyard to grow.  He put down sod and grass and has been watering it like crazy.  He is insisting that ever since he starting watering the sod like crazy, the grass is really taking.   I told him that the reason you can’t lift the grass and the sod up anymore is not because it is ‘taking’ and has roots, but because it is so waterlogged that it is too heavy to lift.

1270657_10100891744803250_168684270_oDad is still busy trying to learn his new iPhone.  He is really coming a long way though from knowing nothing of it.  I am really proud of him for joining the world of technology, as he finally switched from the flip phone to the iPhone.  It is so funny watching him on the phone because he gets so excited when he does something and then he gets so frustrated when he can’t do something.

Well… going to get going. I will write to you again when more info is known about anything.  Thanks again for all your help, encouragement, and support. Remember… When life gets you down do you wanna know what you gotta do?  You gotta keep swimming, swimming and swimming!!  Don’t stop and drown!!”


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September 7, 2013


Just writing to give my usual update as to what is happening. However, I am not just writing to update you because I haven’t written all week, but I did receive some bad news today and I wanted to make sure that I did write today in case something did in fact happen.  I always want to make sure that I keep you as in the loop as possible so I am going to try to include everything that is going on.  There has been a lot occurring this past week and I haven’t been well.  So please bare with me.  If this update isn’t as coherent as the others, I am sorry.

Well, I just wanted to first say Happy New Year or “L’shanah tovah tikatev v’taihatem” to everyone.  Hopefully this is the start of a great New Year.  But, I must say that everything is touch and go right now. Currently, I am supposed to be in the hospital because my bloods have literally crashed and are so very low.  In fact, they aren’t even just listed as “low” on the results sheet, but they are listed as “critical!”  The doctor has stated how he wants me to go to the hospital tonight because of how bad my blood values are, but I am still at home hoping that perhaps my blood will improve on its own or something because I am literally petrified to go to the hospital.

I can’t believe how bad my bloods really are. I have not been feeling well at all.  I went for bloods today and then for hyperbaric oxygen afterwards.  I knew something was going on because I was weaker than usual, suffering from the chills, etc.  I just literally felt like I was going to collapse.  When I finished with hyperbaric oxygen, I saw that the doctor already called me back with my blood results.  It was only a very few hours that had passed and they never come back that soon unless something was really wrong. So when I saw that the doctor had called, I knew that something was really wrong.

Sure enough when I called the doctor back immediately after I came out of the hyperbaric oxygen chamber, I learned how bad my bloods have dropped.  I learned that my bloods were not just considered “low” but they were considered “critical” and that I really needed to be in the hospital.  The values were so low that the lab even tested the blood and then retested it again to make sure that the values were correct.  Due to my bloods being so very low, I was extremely at risk of having an arrhythmia and cardiac arrest.

Yet, I really don’t know if going to the hospital is the best option as of right now.  I know that people might be saying that I really should be going because they will be able to “help” me in the hospital.  But in my case… the hospital isn’t always the best place for me.  I have no immune system and going to the hospital puts me at risk for so many additional problems because there are so many infections and illnesses that are possible to get when you go to a hospital. In addition, I am literally petrified to go to the hospital because I don’t want to be in the hospital alone. You would think that I would be used to the hospital by now especially with all the times I have been there already. However, I have become more fearful of the hospital more than ever.  I am afraid of something happening to me there because if I am to die, I want to be with my family and at home.  I know playing with fire and Russian roulette by staying home and out of the hospital, but I feel like I lasted this long already and made it through ‘bad’ things… I can make it through this too.  I really don’t want to end up in the hospital.

So I am hoping that it won’t have to come down to that.  I am very weak currently and not feeling well.  They increased my meds and even though the hospital might be a better choice in some ways, in other ways it is not because it can also spread my disease easily and I can easily catch another infection or something.  So, I am just hanging out and doing a “wait and see.”  Hopefully things will improve.  But if they don’t or I worsen, I guess I will have no other choice but to proceed to the hospital.

The doctors are thinking that something is definitely occurring in my GI system like a bleed or something.  My bloods are also coming back with the clotting factor being too high, which means that I am having difficulty clotting.  However, with all the GI problems that I have currently been having and all the symptoms that I have been having and how they are worsening, they think that this is all related together.  We know there is a twist/obstruction in the colon and it needs surgery. However, we aren’t sure which it is and they want to do a CT scan to further determine if it is a twist or obstruction.  Once determined, I will need immediate surgery.  We have been delaying this scan though because like I said, once we get this scan I will need immediate surgery and unfortunately, I don’t have the funds right now to get it because I can’t get it done in the local area. I need to go to a hospital that will be able to handle my complex condition such as Hopkins, Mayo Clinic, Stanford, or even Georgetown.  I am also hoping that it will somehow get better on its own because I know it will most likely result in getting a colostomy.

I recently have been to the neurosurgeon and he wants to put the pump into me. I have had the trial for the pump about a week ago, and I had some complications.  I ended up having cerebral spinal fluid leaking out of my spine and as a result, I needed to have a blood patch done and have some ketamine comas/infusions in order to try to calm and reboot my body.  I was originally supposed to have the permanent pump implanted last week, but due to all the complications that have occurred, the surgery had to be cancelled.  So, we are in the process of rescheduling it.  Hopefully it will be soon because I need the pump so very badly.

I need the pump more than ever now because of how much I am suffering and deteriorating.  My meds are not holding me at all anymore and they are getting incredibly difficult to swallow because of my illness.  My neurological disease and autonomic dysfunction is really messing around with my swallowing on top of everything else and therefore, it makes it extremely impossible to take all the pills that I take (over 50 daily).  By getting the pump, it will deliver some of my meds automatically into the epidural space of my spine and it will eliminate the need to swallow the medication. In addition, it will also cause the medication to be more potent, which is something that I can definitely use because I am literally climbing the walls in pain now.  Nothing seems to be helping now so that will be amazing if it gives me some relief.  My GI tract is completely paralyzed and therefore, I really can’t absorb my medicine.  By getting the pump, I won’t have to worry about having to first absorb the medication and having it pass through my digestive system and into my bloodstream and so on.  Instead, it will be directly deposited into the epidural space and go right into the place it needs to go.  I will also be able to be given additional medication to help my illness that you can’t get in ‘pill’ form.

So… there is a lot of promise with the pump even though it is going to be an extremely difficult and risky procedure.  The pump is quite large compared to my body size and therefore I am going to have a plastic surgeon operating on me as well in order to help place the pump in me.  The plastic surgeon is going to try to help build a space and help close me up because the last thing they want would be for my skin to erode and the pump to come ‘through’ the skin.  They are really concerned with the complications I am going to receive after the implantation as well because I don’t have the padding that is necessary to cushion the implant.  I can easily have the skin eroded and have an infection set in.

In addition, the surgeon is extremely worried about the overall surgery because he said that it is an extremely risky and dangerous surgery for me.  Due to my medical condition and the overall state that I am in, he said that anything that I do is basically “life and death.” He told my dad and me this week that he is “so scared for my life” and how scared he is that “I am going to die.” He said that he is so afraid that someone is going to “sneeze” or something and I am going to “die” because of how medically compromised I am and how much I am in bad shape and malnourished.  This is just another reason why I don’t want to go to the hospital now that my bloods are bad because I don’t want to risk getting worse because of something else occurring.  He said, “even though I really need this pump, I need to be prepared that I can very easily die during this procedure.”  Like he said to us, “I am leading a slow death and any intervention or surgery can really kill me immediately.”

1240136_10100886006951950_913814409_nI really need to go for Hyperbaric Oxygen Treatment, but unfortunately it is extremely expensive and the insurance isn’t covering it whatsoever.  I really can’t afford to pay for it and therefore, I won’t be able to receive it without the help of others.  Even though I have only had a few treatments, I have already seen a difference with the treatments.  I actually look forward to the Hyperbaric Oxygen Treatment because if nothing else, it really helps with my stomach and circulation.  I have been really feeling lots of pains in my stomach and I have been more distended and bloated than ever lately.  In addition, I am extremely constipated too.  I walk around like I am 9 months pregnant and ready to give birth. I really need someone to pop me.  The hyperbaric Oxygen Chamber is the only thing that gives me some relief in that area because it helps in the bloating and distension to some extent.  It makes it a little more bearable and when you are suffering in the amount of pain that I am, you will take it.  After all, the more pain and suffering that I am in and the more bloated/distended that I am… the worse my disease flares up and the worse the autonomic dysfunction is exacerbated.  So this little difference in making my stomach feel better actually makes a HUGE difference overall.

In addition, my tissues in my limbs are becoming necrotic, as they are all discolored because of my illness. Even when I elevate the limbs, they are still remaining discolored, which means that they are getting really bad. The doctors are extremely scared that I am going to lose my leg or something. In fact, the doctors said that even if I get better, I may still end up losing my leg because of how much time has elapsed and how long the tissues have been deprived of oxygen.  At least when I am in the Chamber, I am getting oxygen to the necrotic tissue.  In fact, all the discolored tissue actually resumes normal coloration. It is simply amazing.

So I am really hoping that I will be able to continue the hyperbaric oxygen treatment.  There are very few things that I can say actually “help” or make a difference and this is one thing that I can say definitely does help.  Unfortunately though, the doctors say I will need at least 40 treatments and of course if I don’t get any help from others, I won’t be able to undergo those treatments because I definitely can’t afford them on my own.  So I am hoping that the video that was made and my website will bring in some much needed donations so I can receive the lifesaving treatment that I need.  After all, this treatment alone will cost me about $1000 a week alone on top of everything else.

On top of everything else, I am really suffering because of the weather.  I really hate this time of year because it is the “in between” weather.  I am like a “human weather station” because I can feel the slightest change in weather, temperature, humidity, etc.  I hate this time of year because I need like a perfect 75-degree temperature in the house.  However, with the weather that is outside now, it is the type of weather that you don’t really need air-conditioning and can open the windows.  However, with my illness, I can’t tolerate having the windows open.  I can’t tolerate the breeze the comes through the window because it is extremely painful.  It literally feels like I am going through a pane of glass when the breeze comes through the window.  In addition, when the windows are open, there is no real way to regulate the temperature.  At least when the A/C is on or the heat it will go on and off depending on the temperature.  I feel so bad for my parents because they would love to have the windows open.  I would too because it would be great to get some fresh air into the house.  However, it is literally impossible because I really can’t tolerate it. I feel so bad because it is kind of money that is being spent unnecessarily on air-conditioning, as we can easily open the windows because it is so cool outside.  However, like I said before… I can’t take the breeze coming through the window, the fluctuation of temperature because it will go so very low if it is too cold outside or too high if it is too hot outside, and the ‘quality’ of the air because it feels ‘unclean’ and ‘thick!’  When the windows are open, my autonomic dysfunction really flares up.  I become really dry and swollen.  It also makes it extremely difficult to breathe.

We are also leaving Monday, September 16th for Georgetown in Washington DC.  It is only going to be a brief trip, but we have to go to the hospital and meet with the transplant team.  After all, I need to have a multivisceral transplant, which incorporates getting a new stomach, small and large intestine, pancreas, and spleen.  There are only like 6 hospitals in the country doing this rare and radical surgery with Georgetown being one of them. Hopefully the appointment will go well and it won’t be much longer until I receive the transplant.  After all, I really don’t have “time” on my side because this transplant is the riskiest and most dangerous transplant to have of all transplants. The survival rate of the transplant isn’t that great either as it only has about an 80% survival rate after the first year and 50% after 5 years.  The 12-hour surgery is often the only option for those suffering from severe abdominal conditions. I really need to be strong for this transplant so I can make it through it and the more time that passes, the weaker I am getting.  The doctors already are hesitant about me making it through it.  We don’t have time to waste.

This trip will definitely be an experience. Even though it is only going to be brief, I am really excited.  This will be the first time my dad will be in Washington DC even though I have been there before.  I find Washington DC to be very amazing.  There is so much I want to see and do there because I haven’t been there in years and there has been so many changes since the last time I have been there including even a new monument built that is supposed to be simply amazing.

However, we really won’t have time to really ‘sightsee’ because the trip is going to be brief and the main purpose is just to go to the hospital.  Plus, I am really too sick and weak to really travel all over the city to all the monuments because even though they are all located in the same general area, it is still a lot of walking involved.  I am really excited though that the hotel that we are staying at is located 2 blocks from the White House and on Pennsylvania Avenue, so at least we will be able to see that.  We figured that since the city is so difficult to drive because of all the traffic and such, it would be much easier just to jump on the metro and take that straight to the hospital.

But I am really super excited because it appears that I am going to be going to the White House and getting a personal tour from a friend that I grew up with.  I am so super excited because I always wanted to go inside the White House.  My friend that I went to school with happens to work in the White House and she has been generous enough to offer us a private tour of the West Wing, as well as to show us where she works as well.  Not only will it be great seeing her because I haven’t seen her in years, but I can’t believe I am going to be able to get a tour of the West Wing.  The West Wing, also known as the Executive Office Building, houses the offices of the President of the United States.  It also contains the Oval Office, the Cabinet Room, the Situation Room, and the Roosevelt Room.

I really can’t believe that I am going inside the White House.  My friend said that I have to be cleared with Secret Service and I think that is the coolest thing.  I am definitely going to treasure this moment for the rest of my life.  I only hope that they let me take pictures.  I joked around with my dad and said to him that “maybe they will let him sit in the President’s chair in the oval office.”  My dad said that they probably don’t let anyone sit in it.  But I told him at least maybe we can ‘touch’ it and he can feel the ‘power’ in his hands.  I really am hoping I get pictures of everything.

Well… I guess that appears to be everything.  I really want to thank everyone for spreading the link of my video.  I really can’t tell you how much I appreciate it.  I really need attention and awareness made to my illness and website because I need as much people knowing about me as possible.  I need such expensive life saving medical treatment and without the help of others… there is no way that we are going to be able to afford it.  So please continue to spread the word of my website and please continue all your prayers.  I really need them.

Finally, my dad’s birthday is on Monday.  He is turning the big 60.  I really want to make that day super special for him because he is not only my dad, but he is my best friend and hero.  If it weren’t for him, I definitely wouldn’t be here today.  I really don’t know where I would be or who I would be if it weren’t for him. I love him to death and I only wish that there were something that I could do to make his life better and to give him the happiest of all birthdays.  No one deserves a better birthday than my dad because he has done so much for me and no one could have done more than him.  He works his butt off so that he can provide as much as he can for my family by getting up at 3 AM and out the door by 4 AM and not getting home until 7PM from work (and his work is all physical and not even just sitting behind a desk), by taking me to all my appointments, by being there to hold my hand, by being my rock and strength behind me.  He really is something else.  He is really my superhero!  They don’t make anyone better than my dad!!

1185965_10100886003942980_743464133_nSpeaking of birthdays, my dog’s birthday was the other day.  I love my pup.  He just turned 8 years old.  He is like my best friend.  He spends all day with me and he is just the smartest dog in the world. All he has to do is watch you do something once (like open his treat jar, open the gate, etc.), and he will know how to do it!  He can figure out anything and everything.  He even knows how to knock on the back door when he wants to go out and come back inside.  He is totally housetrained and never makes on the floor.  Even when he doesn’t go out for over 12 hours, he will not have an accident.  He is simply amazing and so clever. When he wants something… watch out because he will always find a way to get it.  I bought him for myself, but he really became a “dad’s” dog.  I don’t know where I would be without any of my animals though including my cat, dog, and of course turtle.

Well… Gonna get going.  I will keep in touch!



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