Please help SAVE MY LIFE!

Pictures of Surgery in California

I recently went to California to the STANFORD MEDICAL CENTER for surgery.  These are the pictures that capture my journey during this time.  Unfortunately, it takes going across the country (all the way to the WEST coast) to get the help that can possibly SAVE my life.

I made the trip with my Dad. I have the BEST dad in the whole entire world.  Even when the world looks gloomy and I am not feeling well at all, my dad always makes me feel better.  My dad brightens up my life and makes the sun come out even on the most gloomiest day!!  I don’t know what I would do without him.  He is certainly the best.

Mr. Vomit and me before Surgery
Watching some TV and trying to relax before surgery
Coming out of Surgery!


Thumbs up!! I am the “ENERGIZER BATTERY.” I keep going and going and going. I will ALWAYS survive!!
My dad and me. My dad is my “hero” and best friend. I love him so very much. I definitely wouldn’t be here today if it wasn’t for him!
Dad and me outside the hospital!

Mr. Vomit and me resting before bed!

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July 23, 2012


Well… I finally had the surgery and finally made it out of the surgery.  What a day that I had.  I definitely never wanna repeat this day at all.  It was definitely one of the worst days that I have every had.  I have had plenty of surgeries in the past and believe me… this ranks up there with one of the worst.  I really don’t even know what is going to happen because we are supposed to be coming home shortly and we don’t know if I can.  I am having a really bad reaction to the surgery and therefore, we don’t even know if I can fly or if it is even a good idea to fly.  Everything is just so up in the air right now.

I made it out of surgery and it was so long.  Gosh… when they say that it is going to be 10 hours long, they really weren’t kidding.  I thought it would never end.  I think my dad probably thought the same thing because by the time that it was time to leave, he was going over to all the nurses and saying “I can’t believe that we are here so long.”  We were there literally the whole entire day.  We were one of the first to arrive at the hospital and we were definitely the LAST to leave.  I don’t know who wanted to leave more… me or the nurses because the nurses had to basically stay until I left since I was the last patient.  You know?  

But now… I am suffering so badly.  I am suffering with HUGE fevers and I am in a huge amount of pain.  I never had pain like this before.  You know it is bad because I didn’t even want to take my nightly medications.  I just had the worst stomach pains and the worst headaches.  My dad made me eat because he said that “since I didn’t eat all day, I had to get something in me because after all… I couldn’t afford to lose an ounce.”  Plus… he thought that perhaps that eating might make me feel better as well.  However, it only made things worse.  Basically… every time I move…  the pain and nausea is out of this world.  I only kinda feel the “best” when I lay flat down, but even with that… it isn’t saying much.  

I am not only suffering with pain, but I am literally burning up with a temperature and freezing to death.  Of course we don’t have a thermometer though on hand to accurately tell what exactly my temperature is, but we can see and tell that I am burning up.  Dad wanted to go to WALGREENS, which is across the street to get a thermometer, but I didn’t want to be left alone.  I told him that we should send someone, but of course dad doesn’t want to be a “bother.”  I have taken Tylenol in the meantime, but I don’t think that it is doing anything.  It is just out of this world with the pain, nausea, chills, etc.

What a day that we had though.  I definitely don’t want to ever repeat this surgery ever again. No wonder they don’t have this surgery in New York and they only have it in California at a top hospital like Stanford.  It really was horrible.  It was a surgery that I didn’t even think was possible.  To think… it was being used as a “test” too in order to see exactly what is going on with me.

Even though the doctors are 99.9% sure that I need a transplant of the small bowel, which encompasses the small intestine, large intestine, stomach, and esophagus, they weren’t 100% sure and they said that this test would probably finalize things. Plus, this test would also determine if the next surgery in 2 weeks would be “worth” doing, as they were thinking about putting another tube in me that went from my nose directly into my intestines by bypassing my stomach.  I would then be essentially “starved,” as I wouldn’t be able to eat anything by mouth and only be given 10 cc of food by the tube, which came out to 300 calories per day.  However, if my body and intestines did tolerate it because I suffer from severe paralysis of my intestines and they were scared that if food went in that it would culminate there and form a “bag” and cause more problems, then they would then surgically implant the tube and I would be able to eat by mouth even though I still wouldn’t be able to tolerate the food and still be vomiting, but at least I would be getting the 300 calories on top of the vomiting by via the tube on top of that.  So… perhaps it would make me a little stronger and able to cope with things because they are scared that something is going to happen to me, as I really can’t exist at this current weight.

I barely weigh out of the 60s, and no one can weigh that little.  I look like an emaciated skeleton and they are so very afraid for my life.  They are also afraid that at this current weight, I wouldn’t be able to tolerate the transplant, as it is a very risky and radical procedure. It is the transplant that runs the highest rate of rejection and therefore, I need to be as strong as possible in order to overcome it and tolerate it.  As it is, when I do receive it, I will be hospitalized for months.  It is rarely done and when it has been done, the most successful cases have been pediatric cases.  Only 8 hospitals in the country do it, Stanford being one of them.

Anyway… so they were doing this surgery to explore exactly what was going on in my GI tract, as well as to see if a transplant was necessary and what the next steps would be.  I had the best of the best doctors and anesthesiologists because of my complex and complicated history.  They couldn’t just use any anesthesiologist because of my complicated history and with all the medications that I am on.  So… I had a lot of people in the room to take care of me.  As it was already, my bloods were really bad going into the operation and they were so very scared for my health and that my heart wouldn’t be able to tolerate it.  

There were so many people in the room when I went for the surgery.  Just anesthesiologists alone… there were at least three of them.  I couldn’t believe how many doctors were going to be in the surgery.  I guess they weren’t taking any chances with me whatsoever.  It kinda made me feel better to know that there were a lot of people though in the room even though I would kinda be on “show” because at least I knew that if something should happen… at least they might be better capable to handle it.  After all… in my case… you never know what will happen because all bets are off.  Something is always happening with me because like my ketamine coma doctor once said, “I am a time bomb waiting to go off.”

I really felt comfortable the way they brought me into the surgery.  This hospital did everything in the pre=op area and not in the actual operating room so that it would be as “easy” on me as possible because it would allow my dad to be present for everything that they were doing.  I am much better when I have my dad around because I know that when my dad is around… nothing bad can happen.  He is my “hero” and I know that he is always watching over me.  I know that he won’t let anything “bad” happen to me.  I love my dad so much.  I don’t know what I would do without him.

So they tried to make me as comfortable as possible.  Even when they started the IVs, they tried to make it as easy for me as possible.  Of course more than one anesthesiologist came over to do it, as I was always in the hands of “many” docs.  The anesthesiologist tried to make it as easy as possible.  They worked together because they knew how painful it was for me due to my underlying neurological condition.  I am very hypersensitive and anything that happens to me is extremely magnified.  A simple needle stick is like someone sticking a “knife” in me.  I couldn’t tolerate the IV, but by them working together as a team, they were able to do it.  One of the anesthesiologist kept telling me to “hit” him or “squeeze” him as much as possible.  But… even though I did do that because it was so painful, I kinda felt bad about it.

Wanna hear something hysterical?  The doctors tried to make me as comfortable as possible and since the IV was really painful to me, they tried to make it less painful by giving me something by the IV. No sooner did they give it to me, but I literally zonked out.  They looked at my dad in disbelief because they couldn’t understand how that happened.  They said to my dad that “It never happened that a patient zonked out with the little amount of meds that they gave.”  But my dad assured them that it was me being “sensitive” to meds and that it was because I don’t sleep at all at night and therefore, anything given… knocked me out.  My dad also told them not to worry because I would wake up soon.  Of course my dad was right because I woke up in a bit.

All the doctors and nurses were extremely nice.  I must say that if I ever had to have an operation or a procedure done… I definitely would want to have it here. I never have been more comfortable with a team of doctors.  It just stinks that they are located across the country and on the other side of the coast.  You know?  

Anyway… when it was actually time for surgery, they didn’t bring me into the operating room directly to “knock” me out. Instead, they gave me the medicine in the pre-op area so that my dad would be present and it would make it more comfortable on me.  It was so much better knowing that when I was going to “sleep” that my dad was right by my side.  Plus, they wanted to put me to sleep prior to getting into the room because since I can’t really be “touched” without being in excruciating pain, they figured that I would be “knocked out” and in this way, they would be better able to transport me more easily from the gurney to the operating table.

What a surgery it was though.  When I woke up, I had tubes coming out everywhere.  Even though they were giving me pain meds and trying to keep me as “comfortable” as possible, it was unbearable.  I had a breathing tube in me, I had probes coming out of me that went into my intestines to see and measure the contractions, and I had other tubes coming out of my mouth.  I was in excruciating pain.  I just wanted it to come out already.  Little did I know that I had like another 6 hours like this to last.  It was the longest 6 hours of my life.

When anything happens to my body, my body can’t handle trauma.  Therefore, with all this trauma occurring, it really exacerbated my disease.  MY body was literally “shutting” down as my blood pressure kept dropping and I kept having seizures and the “shakes.”  My body kept going into such cold spells that they had to keep putting “warming” blankets on me because they couldn’t warm me up.  They had to be extra careful though because even though my body temperature was dropping like crazy, they could only put the heated blankets on certain parts of my body due to the nature of my underlying neurological disease.  After all, I can’t even sleep with a blanket touching my legs because nothing can touch it and therefore, they still couldn’t touch it even though they needed to.  I literally had blankets everywhere including around my head and everything.

With all that was happening, after a few hours like this and after all the “horrible” parts of the test were over, they allowed my dad to come into the room while the test finished up.  I had to eat a little egg whites with all these tubes and probes coming out of me to see what the intestines and everything else did.  However, unofficially, I found out from the nurses that there were no contractions. I haven’t gotten the official results from the doctor, but according to the nurses, there were no contractions… which were not a good sign.

When my dad came into the room, he said that he didn’t even recognize me.  He said that I looked like “shit!”  He said that  I was so “pale” and “white as a ghost.”  Plus, he said that he wasn’t really expecting to see all those tubes coming out of me even though they told him what to expect.  He said that I looked “awfully bad!”

They also gave me antibiotics through the IV and they also tried the Octreotide during the operation.  Of course they did this under “watch” because this was the medicine that I had the allergic reaction to when I tried it at home a while ago.  It is used to “combat” the brain tumor, as I suffer from a brain tumor on the pituitary gland and it is causing a lot of problems including headaches, vision problems, bone deterioration, etc.  However, the medicine that I take for the gastroparesis happens to “feed” the brain tumor and therefore, they were giving me this injection to try to stop the growth.  But, I ended up having an allergic reaction towards it.

They gave me Benadryl just in case I would have an allergic reaction to this as well, but it didn’t really help.  Although it did make the reaction “less,” I still ended up having a reaction.  It killed me when they gave me the injection.  It had to go into some “fat” of me, but because I was so very cold, I was bundled up in blankets and everything.  I didn’t want to move and although I knew that the best place and probably the only place to have this injection was in the stomach, I was hoping there would be another place because I didn’t want them to “fuss” with me or anything.  I didn’t want to be “bothered.”

The nurses looked for places that were easier accessible, but of course there weren’t any.  I have no fat anywhere, so it was pretty impossible.  So… I had no other choice but to have it in the abdomen.  I really went through the roof with it.  I told my dad afterwards that I don’t want to take this injection at all anymore. It was horrible.  

I don’t know exactly what the results are because I haven’t met with the doctor to go over everything.  I guess I will call the doctor to go over everything today and find out exactly what is going on.  I do have some questions as well.  I just hope that I make it home because we are supposed to be able to fly home and I am burning up with a fever and really in a lot of pain.  Everything is just out of control.

So… I guess that is about it.  I came back tot he room and literally collapsed into bed.  My throat hurts so much from all the tubes and probes being placed in them.  I also feel really “gaggy!” My dad was reading off what to do and when to seek “emergency help” depending on what symptoms you are experiencing.  I told my dad that I didn’t want to know any of the symptoms because I didn’t want to freak out more that it was perhaps more serious than it was.

So… another surgery has come and gone.  Like “warhorse” and the “Energizer Battery,” I have survived another one.  My dad is having fun going around to people saying “Don’t mind her, she is on some trip of drugs.”  He thinks it is hilarious.  

I can’t thank my dad for all that he has done for me.  I really have the BEST dad in the world.  I just wish that I can make it better for him because I know how hard it is to watch me be sick and not be able to do anything because his hands are tied.  My dad would literally do anything in the world if it meant that I would get well.  I just don’t know how my dad would react if the news came back that it wasn’t good and no contractions were seen whatsoever… and that scares me.  I am scared for myself, but I am more scared for how my dad is going to take it.

I am also afraid about the next steps that we are going to have to take because they will be 99.9% sure that I will have to return to Cali.  Even though this is probably the best place for me to be because the doctors are not like the other places that I have been, I don’t know how we are going to be able to afford it.  With all the other medical costs, the bills are amounting and growing and we can barely afford the bills even at the “stay home” costs.  With copayments alone and that is with the insurance paying, we spend like $25,000 a year.  That is without the traveling, meds, treatments and procedures that aren’t covered by insurances.  Plus, it doesn’t take into account all the money that my dad loses because he can’t work. After all, when he doesn’t work, money doesn’t come in.

We have made so many cuts at home, but they are not nearly enough.  We are really struggling. I have tried a countless number of ways to raise money such as contacting famous people, contacting media, contacting everyone that I can think of, setting up websites for donations, etc., but nothing has come out of it.  It really stinks that my websites were successful in the beginning but since then, they have died out.  I have hung flyers in stores and such, but they haven’t really done much.  It really stinks also that no matter who I contact such as the news and other television shows… I don’t get anywhere.  I see all these other people on TV and such getting help and no matter what I do, I can’t get the attention that I need on my story.  U know?

It is really important that we get some help in donations and funds because it is really expensive.  This disease is extremely costly.  Gosh… people don’t realize that when you have your “health,” you have everything.  I know that money is tight, but if everyone would just donate $1, it would clearly add up.  I don’t know how we are going to afford this, especially with the trips to Florida for the ketamine coma (which is not covered by insurance) and the trips to California, which are very expensive.

If you have any suggestions or ideas in how to raise money, I would really appreciate it.  Please send you suggestions in the “comments” below or to Spunkyfal@aol.com.com.  Anything that you can contribute would be much appreciated.

Anyway… it is getting late and I am not feeling well. I am going to rest because my esophagus and throat really hurts.  I also wanna see what movies are available to “rent” on the iPad so that if we do travel home, at least my dad and I will have something to watch on the way home since the time traveling is so great.  It will take literally like 10 hours to get home and therefore, we have to find something to do before we go crazy.  Plus, besides my dad and I loving to use the iPad and watch movies, at least maybe it will take my mind off the discomfort that I am having from surgery.

Thanks again for everyone’s well wishes and encouragement for this difficult time in my life.  I can’t thank you enough.  If it wasn’t for these encouraging remarks, I don’t think I would have the “power” to go through this.  Thanks so much for all the support because it really means a lot to me.  I thank you from the bottom of my heart and will keep you posted.  I will let you know when I hear anything.  As it is though, when I do come back… I am going to be meeting with the neurosurgeons and brain tumor specialists because the tumor has to come out.  So… I have that to look forward to.  I am just so nervous to eat or drink anything because my esophagus is bothering me. I am so very afraid that between that or by vomiting, it is going to rupture or something, even though that probably won’t happen.  I am just so uncomfortable. 

 Love always,


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July 22, 2012



I just wanted to write and let you know that tomorrow is the big day.  I am leaving in the morning to go to the hospital for the big surgery.  I am so very nervous, but this is what has to be done.  The surgery will be so very important because it will tell us a lot of what is going to happen. Not only is the doctor going to explore exactly what is going on with me, but the doctor is going to hopefully be able to make a definitive answer as to whether I will need the transplant or not.  The doctor is 99.9% sure that it will be needed, but this is needed to confirm it.  I need a new stomach, esophagus, small intestine, and large intestine, as I suffer from severe gastroparesis and they are really paralyzed.  My stomach is essentially “dead” and I cannot swallow.  Nothing at all moves past the stomach and the intestines do not really move anything along either.  It really isn’t good.

I am really nervous about tomorrow, but my dad has been so terrific with trying to keep me “calm” and make me feel as “good” as can be for tomorrow.  He really has done everything that he can to make me as “happy” as possible.  I can’t thank him enough for everything that he has done for me.  I don’t know what I would do without him.  He really means the world to me.  If it wasn’t for him, I definitely wouldn’t be here today.  He is not only my “dad,” but he is my “hero” and best friend.  I love him so very much.  That is one of the reasons why I want to get better so badly.  I want to get better for my dad because I know how much it hurts him that I am sick.  I see it in his eyes how much it hurts him that he can’t do anything in his power to “help” the situation because his hands are tied.  My dad would do anything… even cut off his hands… if it meant me getting well.  But, unfortunately, no matter what my dad does, he really doesn’t have the “power” to make me better medically.  So… he does whatever can to make me better in all other aspects and to make me as “happy” as I can be because it is so difficult to be in my shoes.  He knows I have a lot going on and everything and therefore, he really tried to take my mind off of the bad stuff and make me laugh and be happy. Having this illness is definitely no walk in the park.  It is a struggle every day, and I never get a break from it.  But, knowing that I have my dad with me by my side… it definitely does help.

My dad has really been awesome throughout this whole entire process.  Today, I have gotten a lot of texts from friends wishing me “luck” and such.  So you know hat my dad did? He thought he would be funny and “cool” too and he ended up texting me too.  He texted me the sweetest thing.  He told me how much he loved me and how much he wishes me luck and how he will see me tomorrow. He is certainly the best dad in the whole entire world.  My dad is certainly the coolest.  That was the sweetest thing he has done for me. We did a lot today.

My dad and I did a lot today.  He really made today go great.  We went to the pier, sat there, and watched a little show that a magician did there. We watched the boats, ducks, birds, etc. We walked, talked, and saw Alcatraz. It was really nice. It was the PERFECT DAY. We did go and try to see the sea lions because I really wanted to see them, but they weren’t out. We did a little shopping on the pier as well since they had tons of little shops on the pier.  I bought him a ceramic mouse that was dressed up as a “prisoner” because of Alcatraz so that he could always remember the day.  I felt it fit him perfectly because of what he does for a living.

I also went into the coolest shop that had all this “dog” stuff.  I have a puggle at home and he is so spoiled rotten.  He only eats “gourmet” and he is everyones favorite. He is my dad’s best friend and he is incredibly smart. My dad thinks that my dog can tell time because he wakes my dad up for work or to go to the bathroom depending on what the time says on the clock.  If my dad oversleeps, my dad can depend on my dog to wake him up.  Plus, he is so smart that he can figure out how to do everything. He knows how to open doors, get his snacks out of jars, etc.  He is so smart in that we can leave him home for over 12 hours and never have to worry about him having an accident in the house.  He is really an amazing dog.  Anyway, since my dog is a “puggle,” he is a mixed designer breed.  Therefore, I can’t get a lot of things with him on it.  So, I found a sign to hang up that says “A spoiled rotten puggle lives here.”  Of course I bought it because it isn’t far from the truth.  I also bought him a cookie in the shape of a prisoner because it is from Alcatraz.  I can’t wait to give it to him because he loves these fancy cookies.  I just hope it makes it home without getting ruined.

It was absolutely beautiful weather today.  However, my dad is so burnt from today’s outing, as he is so sunburned.  He looks like a “tomato” because his face, neck, and arms are all red. I didn’t get color at all, which is strange because he was literally right by my side the entire time. I can’t understand how he got so much color and I got absolutely nothing. I am still as pale as ever and as a result, my dad is going around calling me “snow white!” He even said my name should’ve been “Snow” instead of my real name. He really tried to make me happy.

I didn’t think it was going to be so nice though because I thought that I missed out on doing anything in San Francisco.  I thought I missed out on seeing anything because due to my disease, I am extremely hypersensitive and can only go out in the perfect weather.  However, San Francisco is normally chilly and windy, which is not good for me.  However, yesterday had like the perfect weather, as it was like close to 90 degrees, which it never really is. They said it was unusual for that to happen, as it was the warmest day of the year. But, I was way too sick yesterday to do anything. I really thought I wouldn’t be able to do anything or see anything at the wharf because of the weather, but it was absolutely gorgeous today despite the temperature saying it was only in the 60s. It felt much warmer than that. It was quite warm and no wind, which was great because I was as to tolerate it.

I have been suffering from horrible and excruciating headaches lately. I have been getting the worst migraines. I think it’s because of all the stress I have been under these past couple of days with everything that is going on such as knowing that I will have to come back like in 2 weeks for another procedure and to have tubes put in me (They are literally going to starve me for a week while they try to feed me in a tube that goes from my nose directly into my intestines and bypasses my stomach.  I will only be able to get in the tube like 10 cc, which would be like 300 calories. I wouldn’t be able to eat anything by mouth during this week so essentially… They will be starving me because all I will be doing is consuming 300 calories a day, which is nothing.  They don’t even know if my intestines will be able to tolerate it or it will just form a “bag” there.  They don’t even know if it will startup my underlying neurological illness or autonomic dysfunction.  If I can tolerate it, then they will surgically put the tube in me so that I can get the 300 calories through the 10 cc of food in the tube while I eat too). I also have been dealing with the news that I may have a rare disease as well that will explain all this, but I won’t know for sure until another 2 weeks or so. I also most likely need to have my brain tumor taken out too. I also have the transplant to worry about also. Finally, I have the surgery tomorrow, which is really scaring and bothering me because it will determine a lot if things such as making the transplant a definite.

The surgery is very scary because not only is it scary in general whenever you go for surgery, but my bloods are so very bad and I can literally have cardiac arrest any minute. My heart bloods are so low that’s easy to have an arrhythmia. I’m really afraid that my heart won’t be able to tolerate the surgery tomorrow because it’s mega surgery and also a test. It’s like 10 hours long and under general anesthesia. It really freaks me out. It really freaks me out knowing that the surgery is also a test, but it’s like 10 hours long. The first 5 or so hours is under general anesthesia. They will be putting the tubes and probes in me. The second half of the surgery is like 6 hours and I will be semi-awake. The doctor said that they will try to make me as comfortable as possible, but it freaks me out to think I’m going to be semi-awake with tubes coming out of me for so long. You know? I hope I’m not going to be so uncomfortable. I hope I’m going to be ok.

My dad has been joking around with me by saying how he is going back to the wharf to walk around while I am in the surgery since I am going to be in the surgery for 10 hours. After all, he says, “What am I going to be doing for that long of a time?”  I know he is only joking, but I still tell him over and over again that he better be in the waiting room watching those “lights” by my name just in case something should happen to me.  This hospital has a really awesome system in that when a person goes for surgery, they get lights by their name so that people waiting in the “waiting room” can know exactly what is going on.  It kinda takes away the anxiety of not knowing exactly what is going on to your “loved one” because depending on the stage of surgery such as the “opening”, “closing”, etc., the lights change colors to state exactly the progress that is being made.  I think this is an awesome idea because it can really be anxiety provoking for family members sitting in a waiting room to not know what exactly is going on in the operating room or how much longer the surgery is going to be.  In this way, at least they have an idea.

I did tell my dad though that I will give him some things to do.  I know how my dad loves the iPad, so I am charging it up for him. That should keep him busy.  As long as he can get online, it will keep him busy.

I haven’t been feeling well though tonight.  Besides the headaches, my autonomic dysfunction is really stirring up. I am suffering from “blistering” and cold sweats as well.  I don’t know if it is because I am nervous or because of something else.  I just hope my body just “calms” down because I can’t go into surgery like this.  If my body is acting up like this already, I don’t know how I am going to tolerate the surgery because anything that they do to me will cause me more pain and more havoc than it would normally.  I usually can’t tolerate IVs, but if my body is already on “edge,” I really won’t be able to tolerate it.  I am really hypersensitive and therefore, a simple needle stick is like someone sticking a knife through me.  I don’t know how my body is going to cooperate if it is already acting up.

We have to leave really early for the hospital tomorrow morning because we first have to pick up the rental car so we can drive to the hospital.  My dad wants to leave the hotel at 5:30 in the morning, so you can imagine the time that I will have to get up.  Before the surgery, I have an appointment with another doctor because the endocrinologist wants to see me.  She is coming back from her vacation early just to meet me.  She even normally doesn’t even see patients at the hour she is meeting me, but she is making it her business to see me at that hour because she says that it is “important.”  I can’t believe how doctors really have gone out of their way to really help me out here. It really is amazing.  I never had such great doctors.  The doctor will be talking to me about the brain tumor since it is situated on the pituitary gland and will also be talking to me about my bones as well, as they are afraid that I am going to suffer a life-threatening fracture.  The brain tumor is severely deteriorating my bones and as a result, I am extremely fragile.  Unfortunately, the medicine that I take for my severe gastroparesis happens to “feed” the tumor.  So… the tumor has been causing a lot of problems such as headaches, eyesight problems, and bone deterioration and as a result, it must come out.  So… we will see what happens after meeting with the doctor.  I am just so fortunate that I have these doctors that are not only so knowledgeable, but they are willing to go out of their way to meet with me because they normally don’t have appointments when they have been seeing me.

After the appointment with the endocrinologist tomorrow morning, I will be going directly to the surgical floor.  Even though I have been taking medication that the doctor gave me to try to raise my bloods because my bloods have come back so very low and I can easily go into cardiac arrest at my levels, the doctor does want to give me some meds by IV.  It is really going to be hard on my veins because it is hard on the normal person, as it burns the veins up in a normal person.  With me being so hypersensitive, it will be even worse for me.  I really fear that part because I know it is painful for the normal person.  So… I know it is going to be even worse for me.  But, what can I do?  I have to do it, right?  I have no other choice.

I can’t eat or drink anything anymore tonight.  The doctor didn’t want me to take anything by mouth before the surgery, which included any medications. However, since I am on so many opioids, they didn’t want me to have “withdrawal,” so they are letting me take those medications.  They also are allowing me to take the medications with sips of soda because I can only take the pills with carbonated drinks because of the difficulty swallowing.  Even with the carbonation, it has gotten difficult to swallow.  However, without the soda, I would really have no chance of getting them down.  So, they are allowing me to take the pills with sips of soda even though they preferred me not to.

During the surgery, I am also going to be getting ketamine.  So… even though I may not be in my per se “coma,” at least I will still be getting some ketamine.  I am really looking forward to that because perhaps that will “simmer” my illness down a bit because ketamine in a high enough dose has been shown to perhaps stop the progression of the disease and maybe even reverse the disease.  However, the amount of ketamine that would do that is not FDA approved and therefore, I would have to go out of the country to do it.  I am still awaiting the approval for that, but in the meantime, I am supposed to go to Florida to get a more intensive coma treatment of ketamine even though I do undergo ketamine in New York.  These comas won’t “cure” me, but hopefully they will help me BIG time.  They are also giving me ketamine during the surgery because it is supposed to be given whenever I go for any traumatic event because my disease spreads through trauma and the bigger the traumatic event, the more likely it is to spread.  Surgery is one of the biggest traumatic events that you can have and therefore, it will hopefully stop the disease from spreading even more since my disease does spread like a wildflower.

Also, during the surgery the doctor is going to give me the injection of Octreotide that I was giving myself before at home.  The doctor had given me that to combat the brain tumor, but when I took it at home, I had a huge allergic reaction.  I ended up breaking into welts and my abdomen swelled up.  I became very itchy and my throat felt funny.  Luckily, I was able to find a Benedryl because I was suffering from a severe allergic reaction.  After speaking with the doctor though, she said that I shouldn’t take the medication again, as she would try it during the surgery so that she could see exactly what was happening.  Therefore, it would also be in a monitored environment because if something would happen, at least it could be taken care of immediately and hopefully nothing “bad” would happen.  The doctor is hoping that perhaps by changing the technique of the injection or perhaps the concentration, perhaps I can still tolerate and take this medication because it is so very important for the brain tumor because it is “growing” and getting worse, especially since I take other medication that “feed” the brain tumor.  We really have our hands tied if I can’t take this medication because there really isn’t any other medication that can be used to “stop” the tumor from growing.  So… we will have to see what happens.  I guess this will also determine how urgent the brain surgery to remove the tumor will have to be.

Wanna hear something really weird?  I have containers of medication that I have been taking.  I divided up my medication into separate containers so that each time I have to take medication or my dad has to take his medication, it is in a separate vial.  I labeled each vial accordingly, as to whether it was my vial or my dad’s vial… and to what time of the day’s medication it was such as whether it was morning, afternoon, or evening.  Anyway, whenever we are done with a vial, my dad has been collecting them instead of throwing them out.  It is really funny.  He has been lining them up on the desk and keeping count. It is keeping him busy and it is his “creation.” I can’t believe what my dad is capable of doing. Therefore, I have taken a picture and I am including it below:Image

Well… going to get going.  I gotta rest because tomorrow morning is going to be a BIG day.  I will write again when I am “up” to it.  Wish me luck!!  Thanks so much for all your support and encouragement because it really has helped me during this difficult time.  You can’t imagine how hard it has been on me, but knowing that I have your support, it really makes a huge difference.

Love always,


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July 20, 2012



O my goodness. What a day I have had today.  I made it to California.  Yup!! I never thought I would, but I did.  I have had such a huge 2 days.  It really has taken a lot out of me… both the traveling and seeing all the doctors.  I am so very sick from everything.  I am writing not only to update you as to what is happening with me, but as a way or sorting through everything that is happening because I have to do something to get my thoughts together.  I am literally freaking out with everything that is happening.

I guess I should start though by telling you everything from the very beginning.  The flight to California was not easy on me by any means.  We left New York and of course, we were delayed.  It wasn’t a huge delay like we had the last time we went to California, but it still was something. We had huge rainstorms the night before we left for California and we were told that the crew had to “sleep.”  Apparently, there is this rule that they have to be able to have a certain amount of hours of “sleep” and “rest” and due to the rainstorms the previous night, the crew came into the airport delayed and therefore, it cut into their “rest” period that they normally would have had before our flight would have taken off in the morning. So… we had to wait around and wait for the crew to “wake up” and arrive at the airport.  In fact, every member did happen to arrive at the airport on time, even though the time was delayed, but this one crewmember didn’t.  Even though the flight was originally delayed to wait for them, we still had to wait even longer because there was this one crewmember who still didn’t show up when she was supposed to.

Despite the delay though on the first leg of our trip, we were promised that everyone would make his or her connection when we arrived in Chicago.  However, when we arrived in Chicago, it was not the case.  The only reason that we made our connection was because that second part of our trip that would take us to San Francisco was delayed as well.  Thank goodness because otherwise we would have definitely missed the plane.

The flight was horrible.  I was very sick.  My disease makes me extremely hypersensitive and the pain I was feeling throughout the trip was really intense.  I can only wear a sneaker on one foot because the other foot is way too sensitive and too painful to even wear a sock on it, but it got to the point on the plane that we even had to remove the shoe on the other foot because it was “acting” up.  I have the disease throughout my body, but my left leg/foot has it the worst.  I really had a difficult flight because I was so very sick and uncomfortable.  No matter what I did, I just couldn’t get comfortable.

To make matters worse, I had to go to the bathroom just when we were landing in San Francisco.  Since I was already in the process of getting up and due to the nature of my disease, when I say that I “have to go” then I really have to go because I can’t really control my bladder when I get the sensation that I have to go.  On the plane the seats were situated so that there were 3 seats on one side and 3 seats on the other, so I was in the innermost seat, which was the window.  Therefore, it was really a big deal to get out of the seat and go to the bathroom because it meant that my dad and the other person had to get up so that I could get “out” to the aisle, and my dad also had to go into the overhead bin to get my crutches since I cannot walk without the aid of them.  However, just when I was doing so, the pilot came onto the overhead speaker and announced that we were making our “final” descent in San Francisco and to buckle up and prepare the cabin for landing.  However, I still had to go to the bathroom.

I instantly ran to the bathroom even though this message came across the loudspeaker.  The flight attendant was right outside the door preparing the cabin and he told me to “hurry up because it was unsafe to be up at this time.”  Gosh… you never can go to the bathroom fast enough when you need to.  I had visions of being stuck in the bathroom during the landing, which kinda was freaking me out.  I tried to go as fast as possible, but it didn’t feel like I was moving fast enough because I could feel the plane really descending fast since it was making its “final” descent.  Luckily, I managed to finish what I needed to do and made it back to my seat right before touchdown.  However, I couldn’t believe the timing of everything that was happening.  Gosh… things always occur at the worst of times.  When I got to my seat, my dad was like “Was it clean in there?”  I couldn’t believe my dad was even asking me this.  I was like “I didn’t really have time to inspect.”

So I made it to California and of course the traveling took a huge toll on me.  I literally collapsed when we got to the hotel.  I was so sick that I couldn’t even muster the strength to eat anything or move.  My dad however, knew how important it was that I ate, so he literally forced me to go downstairs for dinner.  After all, he said that I couldn’t afford to lose even an “ounce.”  I barely weigh 70 lbs. and therefore every pound is important.  I knew that it was so important to eat, but I just wasn’t feeling well.  But, my dad was on my case so and he made me go down and eat.  I was just so sick, weak, and in pain from all the traveling.  All I did was not want to move.  I had visions that I was going to end up in the hospital with the way that I was feeling.

Anyway, I made it through the day and night and I had all my doctor appointments today.  I went to Stanford Medical Center today and met with my “team” of doctors.  Gosh… I met with so many doctors today and so much has happened that my head is literally swimming with information. So much has happened, and I didn’t receive the best of news.  After all that has happened, I didn’t feel like talking to anyone.  I really didn’t want to talk to anyone because of the news that I received and with everything that I was going through.  But, I knew that everyone cared about, especially how people did give me their phone numbers to text them to tell them how things went, so I knew how important it was to tell them what happened because they “cared.”  That is why I am “updating” my site as well.  I know you care and therefore, I don’t want to leave you out of all that is happening.  Why should I shut all the people that care about me out when this is the time that I can really use them to lean on?

I went to the hospital today because I was going to meet with the Gastroenterologist, Anesthesiologist, Neurologist, autonomic dysfunction doctor, etc.  I have surgery on Monday and I also had a pre-op appointment as well.  Gosh… these doctors are really amazing. I never had such amazing doctors before.  All these doctors are really smart, very knowledgeable, have excellent bedside manners, will answer all your questions, etc.  The only part that stinks is that I have to travel to the other side of the country to see them.  But at least I can say that the traveling is well worth it.  These doctors literally go out of their way to see me.  Some of these doctors didn’t have appointments today, as they didn’t see patients on Fridays.  However, they made it so that they would see me.  I couldn’t believe how they went out of their way to actually come into their practice to see me.  I even had doctors cut their “vacation” short so that they could see me as well.  Who could ask for better doctors?

It wasn’t just my doctors who were amazing.  The entire hospital is amazing.  All the doctors there at the hospital are willing to help you out in anyway possible.  We got lost one time and one of the doctors literally used his phone to call up information to find out exactly how to get to the doctor we needed to go.  Then, he actually took us.  I couldn’t believe it.  This hospital is just simply amazing.  I am so surprised about this hospital because they actually let the patients go outside.  They even take patients out in their beds.  I couldn’t believe it. I guess it is because the weather is so beautiful and everything.  I can finally enjoy the weather here because it isn’t too cold or too hot.  There isn’t any wind to actually bother me either.  It really is beautiful.  I wonder if it ever really rains here because some of the hospital wings and hallways are actually kinda outside.  I can’t imagine it raining because how would you walk through these hallways.  I asked a nurse and they said that it rains sometimes, but only for 20 minutes at a time.  What a huge difference in weather it is from San Francisco because we will literally go from being at the hotel in San Francisco in 60-degree weather to Palo Alto, where the weather is in the 80s.  It is beautiful.

But, I guess what makes the hospital top-notch is the staff.  The doctors stay with you for so long.  They never push you out and they never shun you away when you ask a question… no matter how stupid it may be.  I literally stayed with each doctor I met today for like 2 hours.  My dad and I couldn’t believe the time that they dedicated to us.  It really made us feel very comfortable with how much time they gave us, how they didn’t rush us out, and how they thoroughly explained everything… no matter how stupid the questions may have sounded.

The first appointment that we had was with the gastroenterologist.  It turns out that the surgery on Monday is really long and going to be a really big deal on me.  It is going to be 10 hours long and it will be under general anesthesia for the first part.  They are going to be investigating how my intestines function and to see exactly if a transplant is needed.  Even though they kinda have a 99.9% certainty that it will be needed, they want to be 100% sure before they proceed with it because it is a very radical, risky, and rare transplant.  This transplant is extremely dangerous and runs the highest rate of rejection out of all transplants.  It isn’t an easy transplant either. It will require many months in the hospital afterwards.  Only 8 hospitals in the country perform this transplant… Stanford being one of them.  Also, it hasn’t really been done a lot so far and it mainly has only worked in pediatrics.  So… they are still kinda hesitant to do it because it isn’t really a “successful” transplant. However, in my case… they really don’t have a choice.  My organs are so far gone that I need a new stomach, esophagus, small intestine, and large intestine.  So… we will see what happens afterwards.

According to the doctor though, they are really scared for my life and I am literally dying.  They are even scared that I am not going to make it much longer because of my weight.  Even if I do go for the transplant, they would like for me to gain some weight since it is nutrition and weight that helps you heal.  If I was to go for a mega operation such as the transplant, they would want as much “weight” and nutrition in me as possible because I will definitely need that to recover.  At the weight that I am at now, it would make it extremely hard for me to recover, especially when my BMI is less than 12.

As a result, the doctor wants to put a tube in me that will go from my nose to my intestines.  They really don’t have any GOOD options with my situation, but the doctor said that we have to go with what we have because something has to be done and our hands are really tied.  The doctor said at this point, we only have 2 real options.  One is to have TPN and the other is to have this tube put in me.  The doctor feels that with all my other situations and illnesses, the tube would be the better option because the TPN and surgery to put the ports in would only stir up my disease and cause further havoc on my body.  I have already had TPN and it wasn’t a pleasant experience.  They had to remove it because it caused my disease to worsen.

The doctor said that even though both are not good options, the tube is the better option because at least it wouldn’t be a huge unnecessary operation for no reason.  The doctor would place a tube in me, but it would also mean that I would be “starving” for about a week.  The tube would be in me for a week and if it works the way they are hoping, then they would do a huge operation to surgically put the tube in. During the week that they are “trialing” the tube, I won’t be able to eat though, so they will be essentially starving me.

Due to my severe gastroparesis, my stomach and intestines do not work.  Therefore, the tube will be bypassing my stomach and going into my intestines directly because nothing passes my stomach and my stomach doesn’t empty.  However, my intestines don’t really function either, as they are paralyzed as well.  So, they will have to really limit the amount of “food” they put in the tube.  They are talking about only being able to put in about 10 cc of food per day, which is only about 300 calories.  I will only be able to have that amount of calories, as I won’t be able to eat anything by mouth because I can’t vomit.  Since every time I eat I end up vomiting, I will not be allowed to eat during this time because they wouldn’t want me to vomit up the tube.  So… essentially I will be “starving” during this time.  Even though it is only going to be 300 calories per day, at least if I am able to tolerate that amount and able to surgically implant the tube, I will then be able to get the 300 calories by tube (which hopefully they may be able to increase at a later date) and I will also be able to eat by mouth because even if I vomit, I won’t be able to pull out the tube.

I am really nervous about this procedure because I don’t want to have the tubes.  My intestines are severe paralyzed and therefore I am scared that everything is just going to collect in my intestines and form a “bag” there like it has done in the past.  It is really uncomfortable because it has nowhere to go and as a result, I become bloated and I look and feel pregnant and such.  My stomach becomes so distended and I am so very uncomfortable.  I know it isn’t just me seeing or feeling this because even other people can see and have commented on how “distended” my stomach is.  Plus, when I am distended and really uncomfortable, it really stirs up my neurological disease and causes breathing difficulties because I am so very hypersensitive.  So… it really is a big decision.

However, I really don’t have a choice because there really isn’t a choice.  I am at a very dangerous weight and I am going to die unless I gain some weight.  Plus… if I go for the transplant, I definitely need to gain some weight and get some nutrients into me for “power” to heal and recover.  The doctor said that if I was to go for this procedure, I would be sedated and such when they put the tubes in because it isn’t an easy procedure.  It is much more difficult than putting in a simple Nasogastric (NG) tube that people have that goes from their nose and into their stomach for feeding since this actually has to bypass the stomach by going through it and such, and then going into the intestines.  The doctor also said that she would work with me by shutting off the “feeds” and even slowing them down to give me less if needed if I felt that I was bloated or distended.  Even if I wanted to “stop” the feeds, she said that she would do it.  But, she wanted to at least “try” the tube because there really wasn’t any choice.

So… it looks like I have no other choice.  She wants to do this procedure as soon as possible.  However, it also depends what she sees during the surgery on Monday. If she sees absolutely no contractions whatsoever or such, then she is going to call it. So… it still matters what happens on Monday before anything is fully decided.  In a way I hope that she doesn’t see contractions because I really don’t want to go through this.  But, I know that I have to do everything that is possible, so I have no other choice. I am just afraid because I had an NG tube a little while ago and it had to be removed because it was “backing” up after only less than a quarter of a liter was put in.  But, since this is bypassing the stomach, perhaps it will be a little bit better in receiving the food.  The doctor is also hoping it will help to use this “predigested” food, which should he easier to pass and not make me as distended or bloated.  But, everything is up in the air and a trial.

So… we shall see. If it is a “go” though for this procedure, it looks like I will be returning again in another 2 weeks to have this done.  Gosh… this place is starting to be my “home away from home.” Every time I get to go home (back to New York), I have to turn right around and come back to California.  But, time is of the essence and therefore, it is imperative that I get back and have this all done as soon as possible.  After all, I can’t live at this weight and my body is shutting down.  Plus, it makes anything that I do (even going for ketamine) even more dangerous when I am at this low weight.

The next appointment was with the anesthesiologist because I had a pre-op appointment since I am scheduled to have surgery on Monday.  I am really nervous to have this surgery because it is one HUGE surgery.  To think though… they aren’t even going to be correcting anything during this operation either. They are just going to be using this operation as a way of “investigating” and “testing” what is going on with my intestines and other parts of my digestive system.  I hate to think though that this is a 10-hour procedure and it is so intense.  I never would have thought that a “test” could be like this.  But, I guess it can.

Due to my complex situation and the nature of my illnesses, the doctor (surgeon) is really scared.  I found out that I am not even getting the “ordinary” anesthesiologists.  Instead, they are giving me the “best of the best” anesthesiologists and there aren’t even going to be just one of them in my room.  Due to my complicated history and all the potent medications that I am on, they want to make sure that I am in “good” hands and that they will be able to handle me if a crisis would occur.  After all, in my situation and the way that I am at, it is very possible for a crisis to occur because I am very high risk and take a lot of potent medications that are not usually used everyday in normal patients.  Therefore, they need to bring in the BEST doctors in case a crisis should occur because they will be better equipped to handle it if and when it should occur.  I also found out that they are bringing in other specialists to monitor other parts of me because due to my complicated nature, they don’t want one doctor monitoring more than one aspect of my condition.  There is so much that can go wrong that they are dividing the tasks up among each other.  After all, I am not only on potent medications, but I suffer from autonomic dysfunction, which can bring a whole host of problems. I also change colors in a split second and they have to be ready to act if anything should happen.

I am really an extraordinary case that they don’t see everyday.  They had to have a meeting just to figure out what medications I can take before the surgery since I am on so many medications already and I need them for various aspects.  They wanted to eliminate as many meds as possible because they didn’t want a chance of them over sedating me or having interactions or anything else because it could really cause HUGE problems and even kill me.  Therefore, they went through each and every one of my meds as a “team” and tried to only give me the necessary meds.  They wanted me to continue all the opioids such as the methadone, morphine, etc. because they were scared that I was going to go into withdrawal.  They also wanted me to take all my lung medications as well. However, we also ran into the problem that I can’t eat or drink anything after 10 PM the previous night and the only way I could take my pills in the morning is by having soda with them because of the carbonation.  They really didn’t want me to have soda, but there wasn’t any other way.  Even with carbonation… it is getting to the point that it is extremely difficult to get the pills down, but at least I have a “chance.”  Without the carbonation, I have not a chance.  So… despite them not wanting me to drink the soda, they said that I really had no other choice, but they only wanted me to take “sips” of the soda (the bare necessities) to get the pills down.  It only adds to how much more complicated and riskier I am making the operation, especially since I have the severe gastroparesis already because they want my stomach as “empty” as possible and my stomach doesn’t empty as it is.  Even with the length of time that they have given me that I can’t eat or drink before surgery, they know if is not nearly enough time to “empty” my stomach because I need a lot more time whereas the normal person probably could “empty” their stomach in that time.  That is why they usually tell people don’t eat or drink 6 hours before a procedure.  But… in my case where my GI system is so paralyzed and doesn’t move… I need days notice.

Due to my poor bloods that I have been having, the pre-op team took more bloods on me.  They wanted to get reading on my heart bloods, especially since they were very low when I came here.  My heart bloods were so low in New York that I really should have been in the hospital.  However, the doctors were more concerned about getting me to California and they knew that if they hospitalized me, I probably wouldn’t get to California.  Plus, they knew that I needed to be in the hands of the doctors in California because it probably wouldn’t do any good being in the hospital in New York since they really didn’t know anything.  So the doctors just hoped and prayed that I would make it here.

When I do go for the surgery though, they will going to be giving me ketamine in addition to everything else.  Ketamine is very potent and it is needed to hopefully keep the disease at bay.  After all, the more trauma that occurs to me, the more likely it is that my disease will spread and get worse.  Even the most innocuous hit can spread the disease.  However, the more harmful of course the more chance of it spreading and surgery is very traumatic.  So, with everything happening to me, the doctors are going to be giving me ketamine in addition to all the other drugs when they put me under for the surgery.

My next appointment after the pre-op appointment was with the neurologist.  He specialized in autonomic dysfunction.  We spent so much time with the doctors beforehand that we really didn’t have to leave the hospital at all.  We thought that we would have a “break” before we would see the neurologist, but due to the doctors and the pre-op appointments taking so long because they were so thorough and spent so much time with us, it was basically time for the neurologist when we were done with the pre-op appointment. I couldn’t believe how two appointments took literally 4 hours.  I guess it just showed how much the doctors and staff at this hospital “cared!”

To be quite honest with you… I am not quite too fond of neurologists.  I really don’t have a “liking” for them because they really don’t know quite what they are doing and they usually make up some BS or something.  However, I must say that the neurologist that I saw today was just simply amazing.  Even my dad said so. I even told the doc that as well. I told him how I normally don’t care for a lot of doctors, but I really liked him.  He was so knowledgeable about his field… it was simply amazing.  In addition, he was really nice.  I didn’t feel like he was “messing” around with my head, as most neurologists usually do.  My dad couldn’t get over how informative he was and how much time he spent with us, especially when he normally didn’t have office hours today.  He made special arrangements today to see me, which was really nice of him.  I couldn’t thank him enough.

With all the testing that he did and investigating, I am really surprised that what he found and what he is further investigating was never looked into further beforehand.  I mean… how could all the doctors that I have seen in the past miss this?  From what I brought the doctor from New York and from what he examined me, he saw so many things wrong with me.  He knew exactly what I was talking about as well, which was great because not a lot of doctors know what I am talking about when I tell them what I am experiencing.  In addition, even though I experience a lot of things, I am not always sure of as to “why” I experience it.  It was finally nice to have explanations as to what exactly is going on because he was the first doctor to basically be able to sit down and explain things to me.  So… not only did he know what I was talking about, but he understood me.  I didn’t feel like I was talking to a brick wall.

To begin with… The doctor noted that I have a very lazy right eye and it cannot focus.  When he looked inside the eyes, he saw the damage that was being done by the brain tumor.  Therefore, after examining me and seeing the vision disturbances that I was suffering from such as the double vision, blurriness, as well as the headaches, he said that the brain tumor that I am suffering from on the pituitary gland will most likely have to come out.  The doctor said, “At times we can do a wait and see approach, but with you we cannot do that.”  The reason that they cannot do that is because of my complex medical condition and they don’t wanna wait and watch it get worse, especially when it is this bad already.  Plus, I am taking medication for my severe gastroparesis already that “feeds” the brain tumor and makes it get bigger.  Therefore, they kinda don’t really have a choice but to remove the tumor.  Never a dull moment, right?

Of course removing a brain tumor is not “easy” task.  The doctor is having me meet with the neurosurgeon the next time I come back, which like I said before will probably be in 2 weeks.  They aren’t sure if they are going to open my skull completely to remove it or if possibly they can remove it through gamma knife.  Everything is just up in the air.  All we know is that it most likely has to be removed… especially with all the problems that it is making.

The doctor examined me and my blood work and didn’t like what he saw. The doctor said that I am literally dying because my organs are shutting down.  Based on my blood work and such, I am not getting oxygen to my organs and therefore, they are shutting down.  He also saw that my white count is very very very low and that other vitamins are especially low.  But you wanna hear something amazing? Even the doctor was impressed by this because despite how little I weigh and everything… I am not “malnourished.”  He couldn’t even believe it himself.  But, my albumin is not low, and I am getting adequate proteins and everything.  So… the doctor said “I don’t know what you are doing, but you must be doing something right.”

However, there are values that were really low that certain be.  Some values that were really low included my white count, B6, B12, calcium and Coenzyme Q10.  We think it is because I am not absorbing.  However, it is very dangerous to have these values really low because they are essential for the body to survive.  The doctor thinks though that part of the reason that they might be so low is because of the fact that I have too little mitochondrias in my blood and they are intoxicating me.

My Coenzyme Q10 is extremely low.  Coenzyme Q10 is produced by the human body and is necessary for the basic functioning of all cells. It is known to be highly concentrated in heart muscle cells due to the high-energy requirements of this cell type.  The body’s cells use coenzyme Q10 to make energy needed for the cells to grow and stay healthy. The body also uses coenzyme Q10 as an antioxidant.  An antioxidant is a substance that protects cells from chemicals called free radicals. Free radicals can damage DNA(deoxyribonucleic acid). Genes, which are pieces of DNA, tell the cells how to work in the body and when to grow and divide. Damage to DNA has been linked to some kinds of cancer. By protecting cells against free radicals, antioxidants help protect the body.  In addition, it shows that I have no immune system.

I also was told that my calcium level is extremely low.  It might explain why my bones are deteriorating so badly.  However, even though I am trying to consume the calcium, I cannot absorb and therefore, that is why my calcium level is so low.  I am even getting calcium deposits throughout my body that there are like “marbles” throughout my entire body.  I never knew what those marbles were, but now I do.  It could all be related to the calcium level not being absorbed.  After all, I can take my pills in the morning and then throw them up after dinner.  The pills will literally come out unabsorbed.  They will come out whole.  It is really unbelievable that it is like over 12 hours and it looks like I just took the pills and never swallowed them.

The doctor also examined my reflexes and it appears that I have no reflexes whatsoever.  Something is definitely going on because it is definitely not normal not to have ANY reflexes.  After all, reflexes help protect your body.  A reflex is a muscle reaction that happens automatically in response to a certain type of stimulation. Certain sensations or movements produce specific muscle responses.  When you don’t have any reflexes, it surely shows that something is wrong in your nervous system.

The doctor did all these weird tests that I never had and discovered things that I never knew that I had either.  I am surprised that doctors in New York or any place else I traveled never picked up on any of this because I went to really good hospitals before too, but they weren’t nearly as great as Stanford.  The doctor saw that I twitched and has spasms.  The doctor said it was partially due to the brain tumor, but it is also due to my organs and cells not getting enough oxygen.

The doctor also noticed that I had brown spots and severe atrophy in my throat and tongue. It meant significant things and showed that I had difficulty swallowing.

When taking into account of everything that I am suffering with, the doctor thinks I can be suffering from another disease that would clearly explain everything that I am suffering from.  It is a very rare disease, but it would certainly explain everything.  However, the only thing is that people with this disease don’t live past the age of 50 definitely. There is no known cure for this disease.  The doctor is testing me for this disease as we speak because we have to know if I have it.  When I asked the doctor “what does his ‘gut’ tell him in terms of whether or not I have this illness?” you know what he said?  He tried to make me laugh and he didn’t want to make me panic one way or the other without having all the facts, so his answer was “my professor always said ‘don’t go with your gut because you know what it is always filled with, right?’’” You know what he was referring to… right?  I will give you a hint… sh*t!

The disease that the doctor thinks I might have is called MNGIE.  I can’t believe with all these symptoms that he found that no other doctor has ever picked up on it.  Mitochondrial neurogastrointestinal encephalopathy (MNGIE) is a rare, inherited, multisystem disorder that affects the gastrointestinal (digestive) system and neurologic (nervous system) function. The main characteristic of MNBIE is the body’s inability to move food through the body (gastrointestinal tract) or to absorb nutrients from food causing extreme weight loss and wasting of the muscles.

Mutations in the TYMP gene (previously known as ECGF1) cause MNGIE disease. This gene provides instructions for making an enzyme called thymidine phosphorylase. Thymidine is a molecule known as a nucleoside, which (after a chemical modification) is used as a building block of DNA. Thymidine phosphorylase breaks down thymidine into smaller molecules, which helps regulate the level of nucleosides in cells.  TYMP mutations greatly reduce or eliminate the activity of thymidine phosphorylase, and a shortage of this enzyme allows thymidine to build up to very high levels in the body. Researchers believe that an excess of this molecule is damaging to a particular kind of DNA known as mitochondrial DNA or mtDNA. Mitochondria are structures within cells that convert the energy from food into a form that cells can use. Although most DNA is packaged in chromosomes within the nucleus, mitochondria also have a small amount of their own DNA.  Mitochondria use nucleosides, including thymidine, to build new molecules of mtDNA as needed. A loss of thymidine phosphorylase activity and the resulting buildup of thymidine disrupt the usual maintenance and repair of mtDNA. As a result, mutations can accumulate in mtDNA, causing it to become unstable. Additionally, mitochondria may have less mtDNA than usual (mtDNA depletion). These genetic changes impair the normal function of mitochondria.

So, the doctor is investigating a lot of things since he discovered plenty of things that were wrong with me and were never looked into before.  I won’t know if I have that rare disease for about 2 weeks, but other blood workups should be back before then.  As soon as I know something, of course I will let you know.  I am so very nervous because even though it will explain a lot of stuff if I have this illness, it will make it certain that I will definitively not live past the age of 50 and my life will only further deteriorate with no hope of it getting better.  There is a stem cell and bone marrow transplant that can be done, but it is risky and it isn’t like it is so easy to get a donor.  Plus… all it would do would hopefully slow down the progression of the disease.  Without it, I will continue to suffer and my life will be much shorter then I ever intended it to be.

In order to investigate everything that has been going on with me, the neurologist sent me for bloods.  These were more bloods that were taken in addition to the blood I already gave earlier when I went for pre-op.  When I went to go and get the bloods drawn, the phlebotomist told me to wait until he figured everything out because he thought that he had “duplicates” of the test tubes that he had to draw because he had so many to draw.  Little did he know that he was going to come back to me so quick because there wasn’t any duplication whatsoever?  The phlebotomist had to draw like 15 vials of blood on me, and that was on top of the 3 vials of blood they drew on me earlier.  I almost freaked out because of how much blood that they had to take out of me.  I didn’t think I was going to have that much blood in me without passing out.  No one, not even the phlebotomist, could believe that I needed that many bloods drawn.  When I called home to tell my mom what was going on, my mom even and brother even said “I didn’t know you had that much blood.”

Of course they couldn’t get it out of the same vein though.  With so much blood being needed, I had to be stuck twice (not including the time I was stuck earlier) because the vein collapsed after giving so much blood.  I guess there was only so much blood a vein could give.  The Phlebotomist felt bad that he had to poke me again because he knew how hard it was on me.  I am so hypersensitive due to my illness and a simple needle stick is like someone sticking a knife in me.  I literally felt like a human pincushion.  With everything happening and being stuck so many times, it was really flaring up my illness and I was in so much pain and agony.  I couldn’t wait to get back to the hotel.

However, before we could even go back to the hotel room, we had to stop at the pharmacy as well.  It turned out that when I went to the neurologist, he was able to access the bloods that were drawn earlier today for the Pre-Op.  It turns out that my bloods dropped even more from when I was in New York and I really was in the danger zone.  It was even more dangerous too because I am supposed to have surgery on Monday and I can easily go into cardiac arrest or have an arrhythmia at this value.  My value is literally like 2.8 and a heart attack is surely likely to happen and your heart is likely to go at values of 2.6 and below.  So… it is really walking a tight rope at this value.

As a result, the doctor called in some medication for me to take in hopes that it will bring up my values.  Everyone is scared that something is going to happen to me, including my dad.  My dad went around to all the doctors today saying, “Remember… my wife said ‘don’t come home without her.’”  I was even more nervous because not only were my bloods low before we left the for California and I had a risk of going into cardiac arrest and having an arrhythmia at that level, but now they were even lower.  How much can a body take, especially when it is under the stress of surgery?  After all, with blood values this low, it can’t beat right.

I couldn’t believe it also that when I was walking out of the hospital today that I received a phone call from the anesthesiology team.  They were calling to inform me about my bloods and how low they were.  I told them that I was aware of the situation and I told them how my neurologist just gave me medication to try to improve the situation.  They wanted to try to keep me out of the hospital because if they gave me the medication through IV, it would really cause havoc on me and burn up my veins.  It is really torturous to the “normal” person… let alone me who is much more hypersensitive.  So… they are just hoping that the pills will do the trick.  They said that before the surgery on Monday, they will give me some of the medication for my heart by IV as well to try to bring it up.  I really thought that they were going to cancel the operation because of how low my bloods were, but this is Stanford… they are used to things like this.  They are used to treating the most urgent cases and the most complex cases.  After all, they don’t call it one of the TOP hospitals in the country for nothing.  U know?  If this was New York, I am sure that they would have definitely canceled me.  Thank goodness they didn’t because it would have been a shame to travel all the way here for no reason.  U know?

I am getting a lot of chest pains tonight, but I don’t know how much is nerves, because of my bloods, and what is because of my illness.  I just hope it goes away.  The doctors did tell me that if anything felt “funny” to come right back to the hospital because my bloods are so bad.  After all, when it comes to your heart, you can never be too careful.

Gosh… what a day we had today.  It was definitely a LONG and tiring day.  By the time we got back to the hotel, it was after 7.  To think… we were gone the entire day.  We couldn’t bring back the rental car because it was closed and therefore, we had to park the car at the hotel.  Thank goodness the supervisor was really nice and said we didn’t have to pay for parking because parking is $50 a night.  Everything is just so expensive.

Even with the break that the hotel gave me, everything is just so expensive.  Thank goodness the hotel did give me a discount because it really did help.  However, with all these trips to California needed, I really don’t know how I am going to afford it without the help of others.  Therefore, it is imperative that I get aid from others.  If you have any suggestions on raising money, please don’t hesitate to leave me a comment on this page or you can email me at Spunkyfal@aol.com.  Any help that you can give me would be much appreciated because my life depends on it.  Even $1 would definitely make a difference because each $1 adds up.

Thank goodness the hotel also gave me a discount because I really enjoy staying here.  The staff is really nice and they really make me feel “at home.”  I am really going through a lot and they really have gone out of their way to make my dad and my stay as “easy” as possible.  They will do whatever they can to make it better.  They are extremely nice and always talking to us and even the talking to us and showing us that they “care” really makes a difference.

My dad has really been one amazing dad.  Not only is he my “dad,” but he is my best friend and my hero.  He really doesn’t have to do what he does, but he does it because he loves me.  I can’t thank him enough.  I try to do whatever I can for myself because even though I am “sick,” I am not “useless.” However, my dad won’t let me lift a finger.  He is so protective over me.  Thank goodness for dad though.

I really wanna get better… not just for me, but for my dad.  I see it in his eyes how much it hurts him that I am sick.  I see that he wants to help me out so much and yet… no matter what he does, he can’t do anything to help me.  He knows his hands are tied, and I know that hurts him more than anything in the world.  He is always saying how he “wishes he could take this away from me.”  I tell him though that he wouldn’t want it because he wouldn’t be able to handle it.  He would give it back in a second because it is the worst thing ever.  I never get a break from this illness. I am suffering in agony 24/7 365 days a week.  The pain is excruciating and I can’t take it anymore.  Yet, I hold on because I don’t wanna leave my dad and I am holding on and hoping that I will get better so that I can become a doctor so that I can help others and make them better.

I am really nervous for Monday, and I know it will be here sooner than I think.  I just hope it isn’t too painful. Even though they will be doing the first part of the surgery under general anesthesia, which is when they put the probes into me and the tubes, they said that when I wake up that I will have the tubes coming out of me.  The doctor said that they will try to make me as comfortable as possible, but I don’t know how comfortable that can be with all that coming out of me.  The first part of the surgery is 4-5 hours and the second part of the surgery is about 6 hours.  The hospital is really high tech in that all patients go on a board with a light next to their name.  Depending on the state of what is happening in the OR such as if they are getting put “under,” being operated, being “closed,” etc. the light changes colors.  This way people (family members that are waiting) can know exactly what stage the doctors are on and what exactly is happening in the OR.  It kinda takes the anxiety and the unknown out of the situation.  U know?  I told my dad that he better remember which light is which and not go anywhere.

I also have to decide which I want to go with next. Should the next trip out be to Florida for the ketamine coma or should the next trip out be to California for the trial of the tubes (so that possibly I can get the surgery to permanently put the tube in) and see the brain surgeon as well?  Everything is just so complicated.  I don’t know which is more important.  I asked the doctors here which I should do and which is more important, but they said that they don’t really know because they aren’t “experts” in the ketamine.  However, my dad and the doctors know that both are urgent issues and if I am not helped in either way… I can easily die.  They both know that they both revolve around each other and they both cause each other as well.  So… in a way, it is like a cycle…. One thing causes the other.  It is just… which do you stop first?  I am undecided because even though I know how dangerous it is with these GI issues, who knows if this isn’t a lost cause without going for the coma first because the neurological disease could be causing this to happen and therefore, no matter what is done… you could be getting no where because you are not helping the “root”… u know?  Plus… there is a possibility that with the ketamine coma that it could help the GI issues as well.  We just don’t know what the ketamine coma will actually do.  If I went out of the country to have it done, I would have a 40% chance of being completely cured because the amount of ketamine that I require is not FDA approved.  However, I am currently awaiting the coma in Florida because the coma out of the country in Santo Domingo is still awaiting approval by the IRB board.  Also, even though I go for comas in New York, the coma in Florida is supposed to be at a higher dose, so hopefully it will be more helpful.

After talking to my dad though, he thinks that I should come back to Cali first though and take care of my GI issues because he is too afraid that since the ketamine is so risky and dangerous that it will be even more riskier because of the more GI issues and I won’t survive it.  Plus… if I don’t gain weight or get oxygen in my blood and to my organs soon, I am going to end up dying. But… I guess nothing can be officially decided til after the operation on Monday.  So… just have to hang in there til then.

Well… I guess I have really given you a lot of information to digest.  If you think you were just told a lot, you should see how I am.  I feel like I was just run over by a cement truck.  But… I will come out of this like I always do.  They don’t call me WAR HORSE and the ENERGIZER BATTERY for no reason… right?  I get a “break” the next two days (Saturday and Sunday) because nothing is happening on the weekend.  So… as long as I feel ok and my body holds up and I don’t end up in the hospital, I should be ok.  Maybe I will be able to get out and enjoy San Francisco if my disease doesn’t limit me too much.  I really would like to see the Sea Lions.  Last time I got halfway down the pier, but due to my sensitivity of my illness, we had to turnaround.  There is so much I really want to do in San Francisco like go to Alcatraz, go to the Golden Gate Bridge, etc., but it is literally impossible to do with my illness. I am making a bucket list so that when I get better, I am going to do all this stuff.  I already told my dad that the day I get better, we are going out “drinking” because I never was able to have a drink since I am on so much medicine. I would love to try a “drink” and plus… it would be a great way to celebrate.

Well… until next time.  Thanks for all your continued wishes, support, and encouragement.

Love always,


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July 17, 2012



Well…it looks like this is it.  One more day, and then I am off. I can’t believe it has finally come to leave for California.  Gosh… it feels like I just got back from the last trip and now I am leaving again to go back.  I really don’t wanna go back already, but I know that I have to go back.  I know that it is the best place for me because all the top doctors in the country are awaiting for me to come there. 

I am heading to California because I am headed to Stanford University Medical Center because all the top doctors are supposed to be at that hospital.  All the top doctors throughout the country in all different specialties have supposedly transferred to this hospital and joined a “team” to help me in my illness.  This is one of my last chances because I am rapidly deteriorating and without their help, I will surely die.  I have been to countless number of doctors and traveled throughout the country.  I have been to the Cleveland Clinic, Vanderbilt Medical Center, John Hopkins Medical Center, all the hospitals in New York (Mount Sinai, NYU, Columbia, etc.), Temple University Medical Center, etc., but no hospital has been able to help me so far.  Even Temple, which is supposed to be the #1 hospital in digestive diseases, hasn’t been able to help me.  I am really running out of time and something needs to be done quick if I am going to be able to live.  I am really running out of time, as my body is shutting down.

I am really deteriorating.  I am dwindling down to nothing as I barely weigh out of the 60s.  My organs are shutting down.  Besides my underlying neurological disease, which is extremely painful and affects everything on the nervous system, I suffer from severe Gastroparesis and a brain tumor.  Therefore, my entire digestive system is paralyzed.  My esophagus, stomach, small and large intestines, etc. all don’t work.  They are all paralyzed.  I can’t even swallow, as my esophagus gives me additional problems.  Therefore, it is extremely difficult to eat.  They have tried numerous medications and they even tried parental nutrition such as TPN and NG tubes and everything else, but they all have been unsuccessful. 

I am literally dying.  After all, there isn’t so much more that I can take because I am so emaciated looking, as I only weigh like in the 60s.  I am so fragile and look like a walking skeleton.  I can’t absorb my nutrients and even when I take medication for my illnesses, we don’t even know what I am absorbing. The medication isn’t even dissolving where it is supposed to dissolve, which is in the stomach.  It usually dissolves in my esophagus because it is “paralyzed,” and therefore, it leads to further problems. There are so many problems that it has ulcerated my esophagus because it dissolves there instead of where it is supposed to dissolve, which is in the stomach.  I have had to have endoscopies just to remove the pills because they because dislodged and stuck in my esophagus.  In addition, there are times when I take the pills in the morning and when I vomit after dinner (which is like over 12 hours later), I can take all my pills to my dad in a cup because I vomit up my pills that I took earlier.  You can literally see that they are all “whole” still and not dissolved, which is really weird because you would think that they would be dissolved and absorbed already, especially since so much time has passed.  So… we really don’t know how much medicine is absorbing and really working on me despite the amount of medications that I take.  I take over 50 pills daily, not including the daily injections that I have to give myself as well.

In addition, I suffer from a severe pituitary tumor.  I have been diagnosed with this on top of everything else.  Who says that when it doesn’t rain that it doesn’t pour, right?  So… this has given me additional problems.  It has really caused me problems because due to my severe gastroparesis, I am on medication that actually “feed” the brain tumor.  As a result, it has been growing.  I can’t come off these meds even though we have tried because of the gastroparesis.  The pituitary tumor has really caused a lot of problems because it has caused my bones to severely deteriorate and I am now so fragile that the doctors are scared that I am going to get a life-threatening fracture.  Despite getting one infusions every year that is supposed to build bone, I have lost so much bone.  In the past year, I lost 16% in my hip and 6% in my spine and that is only this past year.  I lost so much other years. The doctors said that without the infusion that I would probably have lost more.  So… I am still scheduled to have the bone infusion when I get back from California.  I hate the infusion because I get so sick from them.  But… you gotta do what you gotta do… right?  I am also having severe vision difficulties because of the brain tumor as well. It is really causing a lot of problems.

So… Dad and I are heading to California because there really isn’t much other choice.  Like I said… I have been to so many other doctors and they haven’t been able to help me.  Doctors are even surprised that I am still “alive.”  They have said though that I need desperate help because they don’t think that I have much longer to live.  They have said that I am really sick.  A lot of doctors are hesitant to touch me because of all my medical conditions.  I am really complex as I have the severe gastroparesis and brain tumor. I also have the severe underlying neurological disease that makes me really hypersensitive. It affects everything on the sympathetic nervous system, which is basically everything in your body.  I also have severe autonomic dysfunction.  I am hypersensitive and extremely in agony, as I suffer from pain 24/7.  I never get a break and even though I am on so many medications including morphine and methadone and take more medicine that would really kill a horse, it really has little to no effect on me.  I am really suffering and I really need help. 

My underlying neurological condition is extremely rare and there is currently no known cure.  I am undergoing rare, radical, and expensive treatments such as Ketamine comas that are supposed to be my “only chance” in helping me.  However, the amount of ketamine that I require is way too great than is FDA approved and therefore, I need to go out of country in order to receive the necessary “help” that I require.  In the meantime, I am going to be undergoing a ketamine coma in Florida because even though I am undergoing ketamine comas in New York, the ketamine coma in Florida will be more intensive than the comas I am receiving in New York.  However, it is also very expensive and unless I receive donations, I don’t know if I will be able to afford it. However, it is imperative that I receive the coma in Florida because it is the root of the underlying problem, which is essentially the root and cause of the severe gastroparesis that I am going to California for.

Reflex sympathetic dystrophy syndrome (RSDS) is an uncommon condition that usually affects arms or legs. RSDS symptoms include intense localized burning or aching pain, swelling, skin discoloration, and altered temperatures, among others.  I have severe hypersensitivity. This means that even the smallest touch or breeze can cause a pain so excruciating that it’s difficult even to comprehend let alone describe it. A simple needle stick is like someone stabbing a knife in me.  Even a simple touch of a feather is like someone putting a blowtorch on me. Hypersensitivity is one of the symptoms that make RSD both difficult to treat and difficult to bear.  The hypersensitivity also makes it dangerous because it laves me at very high risk for infection. Due to my illness, my skin may begin to appear stretched or shiny. It can also harden and become immensely dry till it cracks and the first few layers die and become flaky dead skin for on the first few layers of the affected limb that cannot be removed. It is also dangerous because RSD can cause sores to appear in any given area of the body and is not restricted to the affected limb or limbs. They can range in their appearance from big round stains (usually a reddish color), to something that looks similar to acne. 

RSD can cause other problems in conjunction with my brain tumor.  So between the brain tumor and the RSD, I am not in good shape.  RSD can cause your vision to blur and lose focus.  So, it is really difficult to see.  I also suffer from memory problems, as RSD patient tend to lose short-term memory. For example, they easily forget things they have been asked or are supposed to do, conversation they have had, and people they have had conversation with already. Some RSD patients tend to forget the topic of a conversation in the middle of having one. 

I have just come back from California and now I am headed back there.  I am really nervous.  I am supposed to be meeting all the top doctors when I go there.  There is a whole team awaiting me when I go there and they are even counting down til I get there.  It is so nice to know that they are counting down til I get there because it shows that they care, but it really makes me nervous.  We don’t know if they are counting down because I am a case that they rarely see or because it takes so much planning that is going into treating me. Either way though, I never had a doctor that was counting down til I saw them.  It was really weird when I was speaking to them and they told me exactly how many days there were til I came down and saw them.  It really freaked me out.

My GI system is really bad.   It is causing me not to absorb and therefore, I am having malabsorption and I am probably severely malnourished as a result.  I have really been really thirsty lately too.  No matter how much I drink, I can’t quench my thirst. We think that it is because I am not “absorbing” due to my GI system no functioning right.  My nails are really taking a toll too because of this. They are literally falling off because I am so dehydrated.  It is horrible.  Between the bleeding and vomiting that I am having, I am probably really dehydrated.  Then, since I can’t absorb…. It is no wonder why I can’t quench my thirst.  I try so hard to drink as much as I can so that I can stay “hydrated,” but it is so hard because the more I drink, the worse I feel.  I also suffer from aspirating and the more that I drink, the worse I am aspirating.  I have a lot of fluid in my lungs and the more that I drink… the worse it gets.  Whenever I breathe, you can literally hear fluid in my lungs.  It is horrible.  It is also really dangerous because not only am I drowning in my own fluids, but I can get severe life-threatening pneumonia.  I can also get an acute airway obstruction, which may rapidly lead to death.  I am really in bad shape.

It is really imperative that I be helped with my GI system in California because it is causing so many problems.  Not only is it causing the aspirations, but it is shutting down my organs as well.  It is causing me to fill up with gas as well, which is putting extreme pressure on my organs and causing them to shut down.  The doctors are really impressed with my x-rays and can’t believe how much “gas” is in me.  It is really compressing all my organs and even causing my colon to twist.  Once my colon completely twists, it really becomes a life-threatening emergency, and therefore… it is imperative that something be done and done quickly because we can’t afford for that to happen.  It is so much worse for me too because I am so little.  There isn’t much room in me as it is and for me to be so filled up with gas, it isn’t good. 

I am really nervous to go to California because I don’t know what to expect.  They are talking about having me go for a transplant, and I am really nervous.  They are 99.9% sure that I am going to need the small bowel transplant, but they aren’t 100% sure.  After this visit, they will know for certain.  This transplant is very rare and risky.  It runs the highest rate of rejection of all transplants.  In fact, only 8 hospitals in the country do this transplant, with Stanford being one of them.  It has only been done like about 200 times.  I will be undergoing a transplant that is extremely risky because I need to have a donor that will give me all the organs.  I will need a new esophagus, stomach, small intestine, and large intestine.  It is really risky and important that I get a good match because 80% of your immune cells come from these organs. 

I am heading to California to meet with a whole team of doctors.  I am seeing an endocrinologist, neurologist, autonomic dysfunction doctor, anesthesiologist (because I am having surgery), Gastroenterologist, transplant team, and of course going for surgery.  I am going for surgery on Monday, which is a “test” to see if a transplant is definitely needed.  It is a 10-hour surgery.  The first 3-4 hours is used to put probes into my intestines.  The remaining 6 hours are used to do exercises on them and investigate them.  I guess in the end they will know for certain the results and whether or not if a transplant is definitely needed.  Even though I will be sleeping during the first part of the surgery, which is when they put the probes in, I will be semi awake during the second part.  I am really nervous for the second part because I am going to be semi-awake.  The doctor told me to bring an iPod or something to listen to so it will keep me busy.  I wish my dad would be allowed into the room during this time, but of course he can’t. 

In addition to the surgery, I am also meeting the doctors to try to deal with the pituitary tumor.  The last time I was down there, the doctors put me on another injection to add to the injection that I take already for my peristalsis. Gosh… I am like a human pincushion.  Anyway… I ended up having a huge reaction to the injection.  I got welts all over me and got all swollen.  My throat felt like it was closing up and it was difficult to breathe.  I was also very itchy.  When I called the doctor the doctor told me not to take the injection again.  The doctor told me that when I came for the surgery, the doctor would administer the injection again under “watch” and therefore, she would see exactly what happens. At least it would be under a controlled environment and if something should happen… it could be stopped and helped.  The doctors wanted to see how I responded to the injection and therefore, I was to wait for the surgery, which was when they will administer the injection.

I am really nervous about the brain tumor too because I might need chemo, radiation, or even surgery on the tumor.  Of course I don’t know what the actual game plan is as of  now because I didn’t meet with the doctor for the brain tumor yet, but all I know is that they have to get it under control because it is causing a lot of problems in my body.  I am really afraid because I really don’t want to undergo chemo or radiation or even surgery.  My dad tried to make it better by saying that if I went for chemo and lost my hair, he would shave his hair too.  But either way… I really don’t want chemo.  With everything that I have already… this is the last thing that I need.  I told my parents that if it came down to it… I really don’t know if I would proceed with further treatment or if I would just let nature take its course because when is “enough enough?”  I just can’t take it anymore.  I just want to live whatever time I have left already. I am tired of suffering. You know? 

I am really nervous about going to California because I am in no shape to travel.  Traveling takes a lot out of me because I am so weak and fragile, especially traveling to California because it is on the other side of the country.  It  literally takes an entire day to get there.  I hope it doesn’t go as bad as it does last time because the traveling the last time to California was horrendous.  We left at 6 AM New York time and didn’t get to California til 8PM California time.  We ended up getting on our transfer in Chicago, and we then had to get off the plane and be delayed 5 hours because of mechanical failure.  It was horrible.  Then when we came home, we were delayed again. It didn’t get much better traveling home because we literally were supposed to leave at 11AM and we didn’t get home til 1 AM the following day.  The only bad part this time was that we were delayed the first leg of the trip from California to Chicago, which forced us to miss our connection.  By the time we got to Chicago, there was only one flight left to New York.  Luckily, we made that flight because otherwise we would have been stuck in Chicago.

My parents are really worried about me.  I have been really sick lately, especially since I never recovered from the last trip to California.  My bloods are really bad and the doctors think that I should be in the hospital due to my levels.  My heart levels are really bad and I can easily have cardiac arrest and an arrhythmia.  However, the doctors didn’t want to hospitalize me (even though I really should be hospitalized) because if they did hospitalize me, I wouldn’t make it to California, which is probably the best place for me.  The doctors wanted me to get to California because the best doctors are supposed to be there.  So, they are just hoping that I make it there.  My mom is really afraid that I am not going to come home from California because she is afraid that they are going to hospitalize me there because of everything that is happening with me.  My dad is really afraid that I am not going to even get there because of everything that is happening with me.  Not only are my bloods really bad that I can literally have a heart attack or something, but I am also bleeding internally.  I am extremely weak and I am bleeding internally and we don’t know from where.  All we know is that I am bleeding from below.  So… we really have a lot going on.

I am really worried about having the transplant as well because I was just told that if I did need the transplant, then it looks like we might be moving to California.  I feel really bad about this because I don’t want to uproot my entire family and move them to California. They do so much for me already and I don’t want to ruin their lives and have them move.  However, if I have to live by the hospital, they said that I will have no other choice.  They said that they will have to give up the house and my dad’s business.  I really would hate for that to happen.  In the meantime though, the head doctor in California set me up with her mentor at John Hopkins Hospital in case there is an emergency. Therefore, if there is an emergency I would go there because it is easier to get to Hopkins in an emergency than to California.  It is easier to be heliported there than to California. 

I am really afraid for my dad.  I want to get better and I am afraid of hearing bad news in California, but I am more afraid because of my dad.  My dad is not only my “dad,” but he is my best friend and my hero.  There is nothing that he wouldn’t do for me.  It hurts him so much that he can’t do anything for me.  He wants to help me so badly and it hurts him so much that no matter what he does, he can’t do it because his hands are tied.  He is really counting on California to help me.  I am really scared that he is putting all his eggs in this one basket.  We have been to so many other places and they haven’t been able to help me in the past.  What makes this place any different?  My dad is hoping that they can help me because this hospital is supposed to be the TOP hospital and have the top doctors.  I really don’t want my dad to be disappointed because I don’t want to see my dad hurt.  I really want to get better, not just for me because I want to “live” and become a doctor and such, but I want to get better for my dad.  It would mean the world to me if I got better for my dad.  I know that if something ever happened to me, my dad would never be able to handle it.  

I am fortunate that despite the fact that dad has to work so much to better the family and bring the money into the family so that we can “survive,” he travels to all my appointments with me.  He really scares me because he works so very hard.  My dad works 7 days a week and he doesn’t rest.  He is no youngster and I am so worried that something is going to happen to him.  He works from like 3 AM til 7 PM and it isn’t like he sits behind a desk either.  He is constantly on his feet and even in other homes, which he works in no a/c and in the very hot weather and everything.  There is only so much a body can take and I can see that his body can’t do it all anymore.  I really don’t’ know what I would do if something happened to him. I would definitely never forgive myself. 

But, he does this all so that he could take me to appointments, which making money for the family as well because not only does he want nothing to happen to me, but if he doesn’t make “money” and have the work go out… we can’t survive and I can’t go for further treatment.  However, even despite him working so hard… it is literally impossible without further donations to continue treatment.  We have a growing stack of bills because of medication, doctors, procedures, traveling expenses, etc.  It is just nonstop.  We have made so many “cuts,” but it is not nearly enough.  We really need a lot of help.  We definitely don’t know how we are going to manage going to California or to Florida to get treatment because those places are definitely not treat. I definitely need to go to California, as that is the only place to get treatment for my GI system and that is the only place where I am going to be getting the transplant.  That is the best place for me to be for my digestive system.  I definitely need to get to Florida for the ketamine coma because the doctor in Florida is supposed to be the leading researcher in my disease.  Plus, that coma is supposed to help me in fighting my disease the most.  Even though there is no “cure” for my underlying neurological disease, this is the best chance that I have so far. I really need the ketamine coma and it isn’t even covered by insurance. So… without further help from donations, I honestly don’t know how I am going to afford it because it is easily over $20,000.  Just with co-payments (and that is with insurance), we have medical costs of $25,000 annually.  Then we have the expenses not covered by insurance such as the medication not covered by insurance because we get it out of the country and such.  It’s like the saying goes… “If you have your health… you have everything.” 

I have tried so many ways to raise money.  However, I have been so unsuccessful.  I have tried contacting the media, newspapers, making websites, writing to famous people, but nothing has really worked.  It kills me how I tried writing to television shows for help and I have gotten no responses.  However, I see other stories on the television and I can’t get attention for my story.  I have been so desperate that even though I knew it would be unsuccessful, I still tried and wrote to the President and even the Queen of England.  I figured that it couldn’t hurt.  My website was successful in the beginning, but it died out quickly. 

If you have any suggestions on how to fundraise or raise money, please let me know because it is imperative that I get donations because my life depends on it.  I can’t survive or continue treatments without it.  You can leave a comment on this page or contact me at Spunkyfal@aol.com.  Any feedback or suggestions would be much appreciated.  

Well… I gotta start getting ready.  One more day and I am off. There is so much to do.  I wanna download some movies for my iPad because at least that will keep my dad and me busy on the plane.  It really helped the last time.  Thank goodness that I purchased the extended battery.  I also wanna show my mom how to Face-time because since she can’t be with us in California, I still wanna be able to see her, especially since I am having surgery.  My mom never travels with us because someone has to stay behind and watch the business and house.  Plus, it is too expensive for all of us to travel.  So, it is usually my dad and me who travel to appointments.  I miss my mom though so very much when I go.  So…. At least with Face-time I will be able to see her.  Thank goodness for that, right? 

I will be in San Francisco for at least a week.  Hopefully it will be successful.  I will try to keep in touch.  It is going to be so hectic though.  So many doctors to see.  I told my parents that it is so weird that everyone is counting down to going to California and being excited about going except me, which is the one person who should be excited about going. My dad is even counting down going.  He keeps telling me to “hang in there.  We are going to be in  California soon!”  I think he is doing this because he is trying to keep my hopes alive and trying to keep me going since I am so sick and deteriorating.  I think he is just hoping that I make it to California.  I am sick and just hope that I am going to make it there.

Well… until next time… I guess I will say good-bye.  Gotta keep on fighting though because I don’t have the nicknames WAR HORSE and the ENERGIZER BATTERY for nothing, right?  They call me WAR HORSE because just like WAR HORSE, I am one who has been through many battles, struggles, or fights.  I may lose a battle, but hopefully I won’t lose the overall war.  They call me the ENERGIZER BATTERY because just like the ENERGIZER BUNNY, “I keep going and going and going.”  Even though it has been really difficult and hard, I haven’t thrown in the towel as of yet.  I am still hanging in there  despite all the difficulties.  I am a fighter and don’t plan on giving up yet.


Love always,


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July 12, 2012


Although I have been sick for awhile and have posted on various sites, this is the first time I am posting on this new blogging site.  I am trying it out.  If you want to know what happened to be prior to this, you might want to check my “updates” on another site at http://www.gofundme.com/FallonMirsky.  But, as of now, I hope to be using this site, so you can check back and see all that is happening with me, as my life is like a “soap opera!”  There is never a dull moment!!

I haven’t really been doing too well lately.You know things have been really bad with me because I haven’t really “updated” my webpage.  Usually I update it no matter what.  However, due to my circumstances, there has been no way possible to do so. I have been so sick, weak, and in pain that it literally has been impossible to do so.  I have literally been collapsing and don’t have the strength to muster in order to write.  So… this is the first opportunity that I really have to write.  I don’t know how much I am actually going to get to say because I am so weak and sick, but I wanted to try to let you know what has been happening.

Things have gotten really bad.  I am really deteriorating.  I am only hoping that I “bounce” back.  But… although there have been times in the past that I have bounced back, this time it just isn’t happening. Things are worse than ever.  I am so weak and sick that I am literally collapsing.  I don’t even have the strength to lift up my head.  Usually I am up the entire night, but nowadays, I don’t even have the strength to do anything.  I can’t tell you how many times my dad keeps checking on me to make sure that I am still alive and that I am still breathing.  Something really needs to be done and done quick because I am really deteriorating.  Things just keep going downhill. 

My bloods have also not been good.  They dropped too.  However, the doctor luckily didn’t put me in the hospital.  However, there is absolutely no more “wiggle” room under no circumstances.  The bloods are so bad that the lab literally called my doctor to tell them how bad they really are.  The doctor is willing to give me one more “try” out because they really want to get me to California and they know if they hospitalize me, it could only cause more problems and probably would force me to cancel my trip.

Plus… I got the bad news that if I ever ended up in the hospital, I can’t go to the hospital on Long Island because no hospital really is equipped to handle me.  I was told that they would “stabilize” me and then they would transport me to a hospital in the city such as Mount Sinai.  I am way too complicated for the doctors and specialists here on the island.  Even though the hospitals in Manhattan still aren’t probably equipped to handle me, the doctors believe that they are better than the ones on Long Island.  It really bothers me about that because it means that I will be further away from home.  That means it will make it so much harder for my parents to see me.  I am petrified about going to hospitals as it is… now knowing that I am forced to only go to hospitals in Manhattan, it doesn’t make it better. You would think that with all the past hospitalizations that I had that I would be “used” to the hospital already, but it has gone in the other direction.  I have become petrified of hospitals.  I literally shake when I go in there. 

I am supposed to be leaving for California Thursday, July 19th.  However, my dad is petrified to take me to California in the condition that I am in right now because even though he knows it is the best thing for me, he is petrified that something is going to happen to me. He doesn’t know if I am “up” to traveling and he doesn’t want to come back to New York alone.  I have really been suffering lately with breathing problems.  My heart has felt weaker than usual.  The pain has been out of this world.  The trip that I just had from California really took a lot out of me.  It certainly isn’t easy for me to travel, especially when it entails traveling across the country.  The trip to California last time wasn’t even “easy,” as it was filled with many complications because of flight delays and everything.  We think that the entire trip really took its toll on me. 

However, it seems that we just got back from California and we are headed back to California now.  We leave on Thursday because I have to meet with my new team of doctors, as well as to have a surgical procedure that will make it definitive whether or not I will need the transplant.  The doctors are 99.9% sure that I am going to need the transplant, but without this final surgery, it is not 100%.  The transplant team will be there for the surgery, so I am really nervous.  They think that I am going to need a transplant where I will be getting a new small and large intestine, stomach, esophagus, etc.  It is a very risky transplant that only 8 hospitals in the nation do.  It is the transplant that carries the most rejection rate and it is extremely dangerous.  I am really scared for it.  They have only done about 200 or so transplants in this area so far and there aren’t that many people on the list.  However, it is really hard to get a donor in a way because all the parts have to come from the same person.  In addition, it is very important to get a very close match because 80% of your immune cells come from these organs.  So… it is very important to get a match. 

I just found out too that if I have to live close to the hospital for the transplant that we will be moving.  I really don’t want to move.  I hate to think that I am going to be forcing my family to relocate and close their business. I hate to think that I am going to cause my whole family to literally pick up their entire lives and move to another state across the country because of me.  But, if I have to live near the hospital, we will have no other choice.  Even though my new team in Cali is setting me up with a doctor at Hopkins in case there is an emergency (it is easier to be transported there or to be heliported there in an emergency), I will probably be having the transplant in Cali.  However, it is too expensive to be living at both locations, so something is going to have to give.  I can’t believe that all this is happening.  I really wish I could make this better for my family because I don’t know what my family is going to do.  Without my dad and mom owning the family business in New York, I don’t know how they are going to make a salary in California.  Therefore, I don’t even know how we are going to make an income.  But, I guess that is for them to worry about even though I am so very worried too.

But, we still have time to think of that because the first thing is to make sure that I need the transplant.  I am having surgery on Monday, July 23rd to make sure that it is definitely needed.  During this time, I will have numerous people in the surgery to see what is going on.  It is an 8-10 hour procedure.  I will be sleeping for the first 4 hours while they put the probes into my intestines and everything.  Then, for the remaining 6 hours or so, they will be doing exercises on my intestines to further diagnose how paralyzed and “dead” they really are.  I asked them if my father could be in the room for the last 6 hours since I will be semi awake, but they said “no.”  They did say though that I should bring an iPod or something to listen to so that it can pass the time.  I am really nervous because I never had surgery like this. I never had a surgery that was considered a “test” that lasted for this length of time.  10 hours is an extremely LONG time.  But, at least we will have answers afterwards… I hope. 

My dad tried to be really funny though because he said that he is going to be “touring” when I am going for the surgery.  After all, he said that he couldn’t just “sit” around and do nothing for 10 hours.  I know he is only joking, but still.  I told him that I am going to write down the mileage on the car to make sure that he doesn’t go anywhere.  He said that I am in “good hands” so it would be ok if he left.  Of course he was only joking, but it wasn’t funny.

It makes me nervous that the doctors in California are counting down to the surgery, but it also makes me glad too.  I guess it also means that these doctors really do care a lot if they are paying attention to when the surgery is actually taking place.  I had a complication the other day and when I spoke to them on the phone, they told me that I should wait til I see them because they will do the injection (since that is the complication that I had) when I went for the surgery in “twelve” days.  I couldn’t believe that they actually gave me the amount of days that I had til I had the surgery.  To know the exact number of days til I had the surgery done… it shows that they really care and are paying close attention.  You know?

Speaking of complications though, I had a very severe complication yesterday.  I have a pituitary brain tumor that is growing.  Unfortunately, the medication that I need to take for my severe gastroparesis is “feeding” the brain tumor and therefore, it is making it worse.  The doctor had put me on injections to try to stop the growth of the pituitary tumor because it is causing a lot of problems such as eating away at my bones.  My bones are so frail and the doctors are very afraid that I am going to get a life-threatening fracture.  I am very fragile.  In the past year, I already lost 16% of bone in my hip and 6% in my spine.  That is only one year too; I have lost more bone other years.  I have undergone bone infusions, but even though it was successful in building bone the first year, I have been continuously losing bone after that.  However, the doctors insist that without the infusion, it would be a lot worse.  They are probably right. 

Anyway, they have to do something because the brain tumor is getting worse and really causing problems.  Pituitary tumors grow from the pituitary gland, the master gland of the body, located deep in the skull. These tumors can affect the whole body by interfering with normal hormone production. As the tumor grows, it can cause a variety of symptoms including compression of nearby nerves, resulting in vision problems.  It is not only causing problems with my bones, but it is causing problems with my eyes too.  It is causing vision problems, as it is located right by my optic nerve.  I am having really a difficult time seeing.  I already have to wear prisms in my glasses that are extremely expensive.  When I have to get glasses, the cost of my lenses alone are close to $1000 because the prisms are so very expensive 

Since the doctors really need to take care of the tumor, they have a treatment plan for me that consist of giving myself injections on top of the injections that I already take for my peristalsis and gastroparesis.  They are also thinking of surgery, chemotherapy, and radiotherapy.  Gosh…. With everything else that I am going through… I really don’t want this to happen too.  I hope it doesn’t lead to surgery and chemo and radiation.  Even though I hate giving myself injections, especially when I already give myself injections for my gastroparesis, I hope that it stops with that.  I am like a human pincushion.  Plus… since I am so small and there isn’t a lot of fat on me to begin with… it literally makes it impossible to rotate the spots.  Therefore, I have to put both injections literally in the same area, which is in my belly, which is not good.  It is extremely painful because I am already hypersensitive due to my underlying neurological disease, which makes me hypersensitive to pain and magnifies everything.  A simple needle stick is like someone sticking a knife through me.

However, we had a complication with the injection that the doctor gave me for the brain tumor.  When I gave myself the injection, I immediately got extremely itchy.  I also broke out in welts and had difficulty breathing.  It wasn’t like I took a pill and could “throw” it back up either.  I had given myself an injection, so once it was in me… I kinda was stuck.  I was literally screaming “get it out of me.”  I was having an allergic reaction of some kind to it.  The parents ransacked the medicine cabinet looking for Benadryl so that they could try to counteract the allergic reaction, but you know that whenever you need something… it is never to be found.  However, all that was found was one empty box.  We literally tore though all the cabinets in search of the pills.  We finally found one pill, but it expired in August 2011, which was a year ago.  However, they always say that pills are good past their expiration date, so I prayed and hoped that it would do the trick.  Even though it did work to a point, the injection still made me so very sick that besides the affects that it already gave me, I also became very weak that I couldn’t lift up my head and all I could do was get one word answers out.  No way was I taking that pill again.

I called the doctor in California right away because this was not something to play around with.  The doctor told me to stop the medication right away and that she would try the medication again when I went for the surgery in “twelve” days.  It wasn’t like the surgery was so far off, so she said that I should just “wait.”  She wanted me to wait so she could administer it in a controlled environment and so that she could see exactly what the reaction was.  Therefore, if something should happen, she could see exactly what it was and she could handle it on the spot.  Also, she wanted to see exactly how I was responding to the medication too and to make sure it was even a worthwhile medication to try because we were running out of options to stop the growth and the “power” of the brain tumor.  She needed to know if this medication was even a possibility or something else needed to be done. 

So… it appears that everything is now on hold til I go to California.  I am off to California so I can have this surgery to see if I am a candidate for the transplant.  I am also going to be meeting with a lot of doctors when I go there also.  I have to meet with the Endocrinologist, the anesthesiologist, the GI doctor, the transplant team, the autonomic dysfunction doctor, the neurologist, etc.  Gosh… there are just so many doctors to meet.  I really got some “team” there.  I really think they are great doctors there and if they are as good as the GI doc that I saw there the last time, then I am in really good hands.  The only bad part is that they aren’t exactly located around the corner.  Too bad they are located across the country.   

Wanna hear something really funny?  I have been really sick lately and therefore, I have been constantly asking my dad if he “thinks that I will be ok.”  My dad is always saying that “he thinks so, but he doesn’t have x-ray vision.”  My dad told me that he would have x-ray vision if he had special x-ray glasses. He told me that Bazooka gum used to give you the option of getting those x-ray glasses.  So you know what I did?  Through a great friend, we got him Bazooka gum to bring a laugh to him because this way he can know for sure if I will be ok or not.  After all… no one knows better than dad.

This disease really has taken a toll not only just on me, but my entire family.  I really wish I could make it better for them.  It is particularly hard on my dad because not only is it killing him to watch me go through all of this, but it is also hard on him because he is the one who is taking me to all the appointments and such.  He has to not only manage his work because he owns a business, but he has to take me to the appointments as well.  When he doesn’t work, the business doesn’t go out and the money isn’t made.  However, I also need him because without him, I can’t see doctors.  So… he really has to make himself available in so many different ways.  I am so afraid that something his going to happen to him because he is so overworked.  He works every day of the week and for 20-hour days. There are only so many hours a person can work without it being dangerous.  After all, he is no youngster.  I just hope that nothing ever happens to him because I will never forgive myself.  However, he doesn’t want anything to happen to me and I know that if something ever does… it would definitely kill him.  In fact, even though I really want to get better for myself, I want to get better more for my dad than anyone else because I know how much it means to him.  I see the pain in his eyes because he wants to help me out so much, but his hands are tied.  I am so scared that I am not going to get well and something is going to happen to me.  However, I am more scared that something is going to happen because I am scared that my dad won’t be able to handle it.  I am more scared for my dad than for anything.  Therefore… I can’t let anything happen to me.  I really am my dad’s life. 

I have been trying various ways still to raise money and hoping that my website will still bring in money.  I am trying to help my family out financially in any way possible because I know how expensive this disease is and how much of a burden it is.  However, it isn’t working.  I am desperately in need of money because the cost of this disease is HUGE, especially with being forced to travel constantly across country.  If you can think of any ways to bring in support or donations, please email me at Spunkyfal@aol.com and put FUNDS in the subject line.  I have tried writing to numerous people, but nothing has come about. I have written to the media, magazines, television shows, even to lots of famous people.  I even have written to the President and even to Queen Elizabeth even though I knew that it was pretty pointless and probably wouldn’t get anywhere.  I just am so desperate, so I was willing to try everything and anything.

Well… going to go and rest. Can’t wait for later today because I am supposed to get my delivery that I ordered in California.  I ordered Sourdough bread for my mom and brother in a shape of a crab, as well as sourdough bowls filled with the famous clam chowder that San Francisco is so notoriously known for.  They may not have gotten the chance to go with us to San Francisco, but I wanted to bring some back to them so that they can taste it.  After all, it is soooooo amazing.  I never tasted anything so good.  I only wish I could eat it myself because I remember when I went with my grandma many years ago, we literally lived on it.  However, due to my gastroparesis and severe difficulty in swallowing (my esophagus is paralyzed), it literally makes it impossible to eat.  I definitely couldn’t eat it out in San Francisco because I vomit basically everything I eat, so at least when it is delivered today, I will get to have some because I will be in my own house and won’t be embarrassed so much if and when I do vomit it up.  So… in a way, this delivery of the bread and soups is for me too.

I am also making a BUCKET LIST on my phone.  I am making a list of all the things that I am wanting to do when I get better.  I know it sounds stupid, but this disease has robbed me of so many things that everyone takes for granted.  I can’t do a lot of things and I am basically a “prisoner” in my own house.  I never get to really go out because there is always a HUGE obstacle that prevents me from doing something enjoyable.  I can’t eat; so going out to a restaurant is out of the question.  I can’t really go outside unless it is the perfect weather because I am so sensitive to the sun, temperature, wind, humidity, etc. I can’t be in crowded environments because I can’t chance getting sick because I have no immune system and I catch everything.  Plus, if I do catch something, it can literally kill me because everything is magnified for me.  A simple cold is like the “flu” to me.  Also, I can’t be in crowded places because I can’t be risked getting bumped into.  I am in excruciating pain 24/7 and even the most innocuous touch sends even more pain throughout my body that will send me through the roof.  So… there are just so many limitations that I have due to this wonderful disease and therefore, I have made a BUCKET LIST of all the things that I would love to do when I get better.   When we go back to California this time, I would love to see the sea lions.  I wanted to see them the last time, but my disease unfortunately prevented me from doing so.  We made it halfway down the pier, but the pain from the wind was too much to bear and therefore, we had to turnaround. 

I bought my dad new earphones for the plane because my dad and I watched movies the last time we went to California.  Thank goodness I bought an external battery, especially with all those delays because that really saved us.  Otherwise, we would have been so bored.  I bought my dad headphones last time, but they weren’t ear buds.  With the noise from the plane, they weren’t really that great.  So… I went out and bought him ear buds this time so that he could better enjoy the movies.  After all, I want to make it as easy for him to travel to California as possible because the trip is long and torturous.

Anyway…. Gonna get going because not feeling well.  Talk to you when more news is known and I feel “up” to writing.


Love always,



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