FALLON MIRSKY

Please help SAVE MY LIFE!

May 29, 2013

Image

 

 

Hey-

Well I made it to the Mayo Clinic and I have so much to tell you. However, I don’t know how much I am going to actually get to say to you because unfortunately we have a little situation going on here.  I am having extreme difficulty with my left arm, as it went completely ‘dead’ on the plane and as a result, it is extremely difficult to do anything including type.  But I wanted to try to give you at least somewhat of an update, so I will try my best do as much as I can.

 What a trip it was to get here.  It was really nasty weather outside when we got to our stopover in Milwaukee and as a result, I ended up slipping when I was trying to board the plane.  Even though I was in a wheelchair, you can only take the wheelchair so far and as a result, I ended up slipping with my crutches when I was getting up out of the wheelchair and leaving the actual jet way and going onto the plane.  Thank goodness I didn’t fall and was able to catch myself, but I knew that something happened because I could feel a difference in my body.  My body had jerked and it went through some spasms a little.  But I didn’t think anything severely wrong happened.

 ImageHowever, I don’t know how much is from the ‘fall’ or from the actual falling asleep on the plane, but my arm went dead after I fell asleep on the plane on the way to Minneapolis.  I wasn’t feeling well and I fell asleep.  Dad happened to be his usual devious self and got pictures of me that I would never expect.  He actually went into my bag and took out the camera to take pictures of me because he thought that it was funny the way my face was.  In fact when I woke up and saw what he did, he said, “I would have posted them on the Internet if I knew how!”  I couldn’t believe what he did after seeing them.  Only my dad!

 However, also when I woke up from that ‘nap,’ I couldn’t move my left arm.  We don’t know if it had something to do with the ‘fall’ earlier or because maybe it dealt with the way I was sleeping since I have no fat or padding to cushion the nerves.  It seemed though that my arm and especially my hand were completely dead.  It appeared possibly to be a pinched nerve and I couldn’t do anything.  You know when you hand falls asleep completely and you can’t use it or move it?  That is what happened to me.  I couldn’t even move my fingers.  I was really afraid because nothing I did would enable me to move my hand or my fingers and I couldn’t ‘wake’ my hand up.

 This isn’t the first time this has happened either.  I have had it two times about in the past before and when I went to the doctor, the doctor is not sure what to make of it or why it occurs.  She is afraid though that one time it will happen and the function will never restore.  So I am always afraid of that happening.  In the past it could take like a month for me to regain movement and function of my hand.  I was really freaking out because not only couldn’t I move it, I was afraid it wouldn’t come back.  I couldn’t do anything with my arm. 

 So I have been trying and trying to wake my arm and hand up ever since and hasn’t really gotten anywhere.  It is pretty ‘weak’ and still now able to do many things.  I can’t even really open it or close my hand.  I told my dad that he is going to have to help me brush my hair and wash it because I can’t use my left hand basically at all.  I can’t even hold things in it.  I am barely able to even use the crutches with it, but thank goodness I am still managing to do that.  I just hope that my hand wakes up soon because it is really annoying and you can’t do anything really with it.

Image It was so weird coming into Minneapolis.  Unfortunately there were no direct planes into Rochester, so we had to travel into Minneapolis, which was 80 miles away.  I am surprised the flight wasn’t canceled though because there was only like 29 people on board.  The plane wasn’t even a small plane either, as they took one of the Boeings. But, we made it to Minneapolis and we were very lucky to have a very lovely couple drive meet us in the baggage claim and drive us to Rochester.

 ImageSince Rochester was some 80 miles away, we were going to use a prop plane to fly over there, but we decided it probably would be easier considering everything including the weather to drive the 80 miles instead.  So, the pilot and his wife that was supposed to fly us ended up driving us.  They were such a lovely couple.  We had such a great time traveling with them and even requested to have them take us back.  We didn’t know if they would be able to, but we were hoping.  When we found out today that they would be able to take us back to Minneapolis to get our return trip home, we were elated.  Since we will have to return back to Minnesota shortly, perhaps they can pick us up again.  They were the sweetest and nicest people.

 The Mayo Clinic is simply amazing.  It is simply HUGE.  There is so much to do.  It is like Disneyworld for the sick.  I kind of feel really comfortable here because no one really stares or anything because everyone is usually sick and everyone (like all the staff in all stores, hotel, restaurants, etc.) cater to you.  If you are weak or get tired when you are out, you can call an ‘escort’ service or get a wheelchair in a minutes notice so that you don’t have to worry about passing out or collapsing.  You don’t have to worry about eating because all the restaurants cater to you and prepare the foods to situate any need that you need.  They also make all dishes ‘healthy’ in general because of the location and because they know all the people here are really there because of their health anyway.  There are tons of shops allover the place as there are stores after stores after stores. Now I know how this town makes it money because you probably can literally go broke coming here because there is just so much shopping to do.  The have literally every single store you can imagine.

 It is like this huge campus that is filled with miles of stores and hospital affiliated places that see patients.  It’s simply amazing.  You don’t even have to go outside to go to any of the stores or to any of the hospital buildings.  Instead, there are skyways and a ‘subway’ system that consists of underground tunnels to take you.  It is awesome especially since the weather has been so gross here.  It has been so disgusting that we have been freezing.  It is so cold, rainy, and raw.  We had to literally have the maintenance man come to our room and shut the a/c off so we can get heat because it was too cold. 

 What is so weird though is that everything closes on holidays and at 5 PM. So when we arrived we really couldn’t do any shopping or anything else whatsoever because it was Memorial Day and everything was closed.  Even stores like Barnes and Nobles was closed.  I thought stores would be open especially since people were ‘off’ from work and they could do some shopping since they had nothing else really to do.  But dad told me that this was how New York was back in the day before it became commercialized as it is.  What a difference.

 There is also this huge Mall that I really want to go to.  It is called Mall of America and is supposed to be the biggest mall in America.  It is supposed to have every single store you can imagine plus it has an amusement park with three roller coasters (even some that go upside down), a Nickelodeon Universe, a mirror maze, a underwater aquarium, Lego world, etc.  It is something that is supposed to be out of this world and something you could spend the entire day at.  It is even still expanding as it is adding an Olympic size ice rink to it.  I made dad promise to take me there when we come back because I really want to go and do the Mirror Maze but we really don’t have time during this trip.  So hopefully next time we will be able to go.

 ImageI have never seen such a huge hospital and I am so tired from today’s appointments.  They have been nonstop from 7:30 AM to 5 PM.  It was crazy… especially with how much walking we had to do.  We must have walked over a mile easy because we did so much walking to appointments and this place like I said is HUGE.

 Thank goodness I had the appointments set up the way I did because if I had the second appointment first, I would have been up the creek because even though all the doctors were concerned about me and fearful of my life, the second doctor was a mess.  He kept saying how I was going to ‘die’ soon and was really SCARED.  It actually took my first doctor to kind of ‘calm’ him down. 

 After seeing the first doctor, we decided we would meet later to decide if I would have to be admitted or anything based on the results she received.  So when I got the call that she wanted to actually ‘see’ me, I was kind of scared.  I was expecting to get a call from her, but since she physically wanted to see me, I didn’t know what to expect.  Today I had so many tests such x-rays, EKGs, lots of blood work, etc.  I met with lots of doctors too such as my gastroenterologist and endocrinology.  It was the endocrinologist that really was the doctor freaking out because he saw how low my BMI actually was and it was below 11, which is basically death.

 It was determined that I needed to be hospitalized and have surgery.  So I am going to have to come back because there is too much to be done before the hospitalization takes place and since I have to leave on Saturday to go home, it would never be done.  Plus, I would need to be hospitalized for like 2 weeks and there really isn’t enough time.  So it was determined that even though they are extremely fearful for my life, I will return for another visit in about 3 weeks and be hospitalized at that time and have the necessary surgeries and such then.  But I am still going to have the appointments that I need in the next few days, so it won’t be pointless to be here.  There is still so much to do.  Tomorrow we meet with even more doctors and such including cardiologists and dieticians, and Friday is even more doctors. 

 I have to be admitted because not only am I really in bad shape, but everything that needs to be done can’t really be done in an ‘outpatient’ setting.  Since my GI tract doesn’t work, it has caused so many problems that need to be handled.  One thing that has happened is that I am very loaded up on stool because I can’t ‘empty’ it since I have no neurological function of the intestines or stomach to ‘empty’ it.  My GI system is basically ‘dead’ and therefore nothing is being ‘pushed’ through.  So everything is literally at a standstill.  Since I cannot empty it with enemas, laxatives, etc., they are going to have to use surgical techniques to do it. 

 It is going to be one weird and scary process.  Since I am so loaded up they have to be extremely careful because it can really cause dehydration and electrolyte imbalance.  It is also going to cause me to lose more weight because some of weight is made up of this stool.  I could very easily walk out weighing in the 50s.  I told the doctors that I would freak out.  But that is how loaded up I am.

 I also now have the reason why there is just so much mucous coming out of me and why it is so foul smelling.  The doctor told me that I am so ‘loaded’ up and since it is sitting there so long that it is literally ‘rotting.’  At least I was finding some answers to things.

 In addition, they want to do surgery on me to explore and work on my swallowing since I can’t swallow.  They are afraid that I won’t be able to get down my meds whatsoever.  So they are going to do surgery on my esophagus, biopsy the esophagus, and explore at the same time.  However, they have to be careful with all my underlying problems because they can really exacerbate them.  They are also going to have to give me ketamine because that is the only thing that will help keep the neurological illness from becoming worse and keep me more comfortable.

 The doctors also want to put in a port in me to try to feed me.  They want to first try also dragging a line into me that will go through my stomach and into my intestines to try to find any portion of the intestines that might be viable, but they don’t know if they will be able to do so.  Either way, they want to put in a port (probably a central line or something) so that they will have access to feed me and a way to put the IVs in and give me medication.  They figured that if the tube into my intestine doesn’t work, I will have the port to give me TPN and I will go home on that.  However, the doctors are really worried about a process called “refeeding syndrome,” which is a syndrome consisting of metabolic disturbances that occur as a result of reinstitution of nutrition to patients who are starved or severely malnourished.  Refeeding syndrome usually occurs within four days of starting to feed. Patients can develop fluid and electrolyte disorders, along with neurologic, pulmonary, cardiac, neuromuscular, and hematologic complications.  So they are really scared it is going to happen to me and as a result, they are going to have to go extremely slow.  They said they will have to go so slow that they will basically start with sugar water and increase the calories ever so slowly because of how hypersensitive and complicated I am.

 Because I am so complicated and so hypersensitive, they are taking every precaution and trying to make it as easy on me as possible.  They are going to try to make it as painless as possible and since I can’t even tolerate IVs in general, they are planning on placing all the lines (including IVs) when I am under general anesthesia.  So that should be good.  They really seem like they are willing to work with me.

 I really hope that something good comes out of all this.  Not only are the doctors talking about putting lines in, but they are talking about putting lines in that I can open up to ‘vent’ if need be since I build up with gas and cannot eliminate it on my own due to my severe paralysis of my GI tract. I have become very bloated and distended because I fill up with gas and such and can’t eliminate it.  In fact, I become so distended that it looks like I am ready to give ‘birth.’  I joke around that I need to be popped, but in reality it is incredibly painful and bothersome.  Well, the doctors said that with these tubes, I will be able to ‘vent’ out the air and gas, which will eliminate the bloating and distention.  They said this might make me feel better especially when being ‘fed.’ 

 So a lot is going to be happening.  The only problem is that we don’t have the finances or time to do everything and we were planning on going to Georgia for the high dose ketamine coma and going to California for the tubes again in June.  However, now with having to come back to Mayo, we honestly didn’t know what to do because of course we couldn’t do everything.  So we sat down with the doctors and discussed everything and went through what each place was going to do.  We tried to figure out where I am best off going since I don’t have the finances or time on my side. 

 It was determined that I probably would do best in Mayo and Georgia. I need Georgia for the Ketamine, but even though we had it planned to go to Georgia shortly after coming home from this trip, as we were planning on leaving June 10th, we thought it would be better to postpone the trip to after Mayo.  Even though it would hopefully work and give me the pain relief that I need, the doctors and my dad didn’t want to go through it all to only have it all aggravated by the procedures and surgery that would be done right after at the Mayo.  So they thought it would be better to save it to afterwards and this way whatever they do in Georgia wouldn’t be ruined by surgery or procedures because any type of trauma will always have the chance of exacerbating my illness and making it worse.  It would be pointless to have made it better for it to only be made worse again when we went to the Mayo a week or two later.  You know?

 So, we decided to hold Georgia to mid-July.  I just hope that I can last that long.  We decided to go with Mayo over California because they are going to do the same thing that California is going to do with the tubes and it is easier to get to.  Plus, they are willing to do that other procedure of ‘unloading’ all the stool from me, as well as putting in the vents and such.  Plus… even though both hospitals are outstanding, the Mayo Clinic is supposed to be top notch and known for only the sickest and rarest cases that can’t be helped elsewhere.  So I am hoping that going to Mayo will be the better place.  The only thing that is bad is that the doctors did say that they think it will end up after all this still needing the multi-visceral organ transplant, which is the radical transplant of the stomach, small and large intestine, pancreas, and liver, and they don’t do it.  So, that is the only thing… whereas California does.  So like always I am between a rock and hard plate.  I just hope I am making the right decision about going to the Mayo instead. 

ImageBefore I go, I want to share some ‘funny’ stuff.  I am here with my dad of course.  He is my best friend as well and I am so fortunate that I have him.  I love traveling with him.  So even if nothing ‘good’ happens, at least I get this time to bond with him and be with him because he is always so very busy with working.  He works so hard when we are home trying to make ends meet… as he is out of the house at 4 AM and not home til 7 PM.  Then from working so hard, he always goes to sleep.  So at least I get to be with him during this time and spend ‘quality time’ with dad. I just love being with him.  There is nothing that he wouldn’t do to get me well and it hurts him so much that his hands are tied.  It hurts him that no matter what he does, he can’t get me well or no matter how hard he works, he can’t afford the much-needed treatment that I require to survive and make it.  If something ever happened to me, he would never be able to continue on. 

 Anyway, being with my dad is always an adventure.  We always do the coolest things together and he always makes me smile even when there is absolutely nothing to smile at.  He always finds a way to make me laugh and be happy.  He is one amazing person. If I didn’t have my dad… I don’t know what I would do.  That is one major reason I want to get better.  I want to get better for him and so he can see me become the doctor I so want to be.  He is the major reason why I am holding on for so long.

Image

 Well… when we were leaving today for the hospital, he said that he wasn’t going to have breakfast at all.  But when we went to get coffee, he of course saw the eggs and sausages and nothing gets in the way of that.  I knew once he saw eggs and sausages that would change.  As dad says… “Load them up!”  He can literally go through at least 3 plates of them.  I was like “I thought you weren’t eating.”

 So that appears all.  I guess I will stop here for now.  I think I wrote enough and there really isn’t much else to say.  I will definitely keep you posted as to what is going to happen, but I just wanted to let you know the latest as to what has been happening here.  By the way, I forgot to add that the team that will be treating me in the Mayo consists of 80 GI docs because each person does their own thing.  The doctor also told me not to hesitate to call her for anything, and she will always call me back.  So hopefully I am in the right place and they don’t call it the MAYO CLINIC for nothing.  But we will soon find out.  Like my dad has said in the past, “It won’t be the first time we have made a mistake!”  It is just that we can’t afford to make them anymore, so hopefully everything will go well!  Fingers and toes crossed!!

 Love, Fallon

 

 

Advertisements
Leave a comment »

May 24, 2013

ImageHi-

As we are getting closer and closer to leaving to the Mayo Clinic, I wanted to write and update you on the very latest.  This way you will know exactly what is going on.  The Mayo is getting to be so very close.  However, even though it is only 3 days away, as we leave on Monday, I am not counting on going and being able to get there until I am physically there because anything can happen in the next few days especially with me.  My health isn’t really doing too great and my bloods aren’t really doing well either. .  I knew that something was definitely up because my body was having more spasms and cramps than ever.  So all bets are off until I get there.  I don’t want to count my chickens before they hatch.

Before I begin, I want to just let you know something BIG and some good news. One of my favorite authors got whim of my illness through a friend and she actually wrote me a personal email and is trying to bring attention to my cause.  I honestly couldn’t believe it when it happened and I still can’t.  She is one of my favorite authors of all times and I can’t believe that she actually ‘contacted’ me.  She posted something on her FACEBOOK page to help me out as well as tweeted about me too.  Perhaps even though I can’t get the media’s attention because it ‘isn’t what you know it is who you know,’ maybe this will help a lot too.  If you want to check it out or read any of her books, her name is Jodie Picoult.  She is one amazing author and has written books that have went on to become great movies such as “My Sister’s Keeper!” In addition, another one of her fans started a hashtag for me on twitter @helpFallon.

We are supposed to be leaving Monday for Minnesota because we are going to the Mayo Clinic.  However, I am not doing too well and to be honest… I really belong in a hospital.  I really need to seek medical attention more than ever because not only am I not feeling well and my organs have been shutting down and such, but my bloods (which have been low already) have fallen even more and other things are now going wrong in addition to everything that was happening before. I am also having a really hard time eating anything at all, as even ice pops are getting unbearable to get down. Even taking the pills that I need to take to survive are impossible to take because I can’t tolerate the carbonated drinks or slushies that I make to swallow them.  Forget about going to the bathroom also because even that has become basically an impossible feat.  My body is just deteriorating and to be honest, I don’t know how much more it can take.

We are really scared because my heart bloods were dangerously low before and have fallen even lower.  They are really in a range where cardiac arrest is so very possible. Plus, other levels are worsening including the carbon dioxide level, the brain tumor level, and amylase level.   The doctors are worried because I have been having trouble breathing and now with a high carbon dioxide level, it further shows that I am not breathing fast enough to support the functions of the body. High levels of carbon dioxide only compounds the problems that I am already suffering from the Reflex Sympathetic Dystrophy and Autonomic because it can cause flushed skin, increased blood pressure, muscle twitches, reduced brain and nerve function, headaches, confusion and lethargy.  It is important to fix the carbon dioxide level because it can also further lead to damage to internal organs such as the brain.

I am really just a disaster and honestly should be in the hospital.  However, the doctors are trying to hold out as long as possible because if I were to go into the hospital now (even though it probably is the best thing), it would mean that I won’t be able to go to the Mayo Clinic on Monday, which is way too important to miss out on.  We can’t afford to miss out on the Mayo because that is something that we have waited so long for and hopefully will make a huge difference.  After all, we have traveled across the country and there really isn’t many doctors to help me nor is there really any potential treatment to help ‘save’ my life.  We are really hoping that great things are going to happen at the Mayo Clinic because it is supposed to be one of the top hospitals in the country and great things happen there.  They only take on the rarest and severest cases.  They only take on the cases that can’t be helped elsewhere.  Usually the wait is like months to get an appointment even, and to get an appointment earlier… you have to be really gravely ill.  I have been able to get an appointment within a month or so, so it shows how ill I am that they have given me priority when the waiting list to get an appointment is so very long.  I don’t want to do anything to jeopardize this trip because great things are happening at this hospital.

Not only is this one of the top hospitals in the country and have some of the top doctors in the country, but it is also a research hospital and have research going on that is not being done anywhere else in the United States.  They discover things there that no one else knows of.  Mayo Clinic is a nonprofit worldwide leader in medical care, research and education for people from all walks of life. Doctors from every medical specialty work together to care for patients, joined by common systems and a philosophy of “the needs of the patient come first.”  They just don’t have technologically advanced medicine, but they have a caring attitude of the doctors.  Mayo Clinic’s multidisciplinary research teams translate new discoveries rapidly to improve the prevention and treatment of disease and injury.

They have things going on at the Mayo Clinic that no one else has heard of.  I am really hoping that will be able to help me.  In fact, it was them that we learned about one of the conditions that I am suffering from.  I had a very high level of Eosinophils and the doctors couldn’t figure out what it was due to.  Well, the Mayo Clinic researchers were among the first in the United States to recognize Eosinophilic Esophagitis as a new disease. Mayo doctors have extensive expertise and experience treating this condition and other conditions of the esophagus and are actively involved in research on new therapies for eosinophilic esophagitis. This ongoing research means that in addition to standard eosinophilic esophagitis therapy, you may also have access to experimental treatments not available elsewhere.  Not only that, but they said that this condition contributes to ‘dysphagia’ by secreting compounds that make the esophageal lining sticky or by making the esophagus stiff and less effective in propelling food downward, thus disrupting the easy passage of food.  When they explained the feeling that patients were feeling, it was the exact feeling that I was feeling.  It took the Mayo Clinic to figure out what happening with me because no one else could.

So I am really hoping that I will make it there before anything further happens.  It is going to be a long trip for me though, but you gotta do what you gotta do.  I just hope my body holds up because all this traveling really makes my disease worse.  I will be traveling basically the entire day.  Thank goodness though that I checked the tickets this past weekend because I realized that I had booked the tickets to the wrong airport.  Can you imagine if I didn’t check the tickets and ended up getting on the plane and ended up in the wrong place because I ended up booking the plane tickets for Rochester, New York instead of Rochester, Minnesota?  But thank goodness I caught it in time.  The only bad part was that even after I found the mistake, we found out that the closest the airline flew to our destination was Minneapolis, Minnesota, which was about 80 miles away from Rochester, Minnesota, which is where the Mayo Clinic is.

We were really stuck because in order to get to the Mayo Clinic in Rochester we had two options… either take another shuttle flight form Minneapolis to Rochester or drive the 80 miles.  However, both ways were extremely expensive.  Who would think that a short flight like that would cost $400 per person round trip or that driving would cost $200 each way for the rental car?  It really was a lot of money.  Thank goodness though we were fortunate that someone came forth and volunteered to fly us on a 4-seater prop plane from Minneapolis to Rochester though for free.  Even though we are kinda scared of flying on a prop plane because they are so small and dangerous, I am sure it will be ok.  But it turned out after all that we won’t be flying because with the weather being the way it is in the Midwest and such, the pilot thought it would be easier and safer to drive the distance instead and asked if we minded if he drove us instead. Of course I didn’t mind because after all those planes don’t fly in bad weather and there would be no guarantees that the plane would fly.  At least we would be guaranteed to get there like this.  Plus, at least we won’t have to worry about a  ‘weight requirement’ and such.  We are so fortunate that he was willing to drive us to Rochester because we really can’t afford these extra expenses.  When I offered to give him something, he refused to take anything, but we are extremely thankful.

Image So… we will let you know what happens when we get there.  We are supposed to be going for a week and therefore, we are supposed to be coming home Saturday, June 1st.  So… just keep your fingers crossed that something good happens there.

In the meantime, I am also going to be headed to Georgia.  It turns out that there is another doctor that has joined my ‘team’ down there.  Since I can’t get out-of-the country for the very high intensive ketamine coma that I really need due to the finances and because we are having a difficult time finding a place that is doing it at the current moment, we are going to be going to Georgia to have a very intensive ketamine coma down there.  Even though I have been having ketamine comas in New York, the amount of ketamine that I require is way too great and not FDA approved and no where the amount that I have been getting.  As a result, we are going to be going to Georgia where hopefully this new doctor will be able to help us.

I love this new doctor.  He is extremely nice and I am so fortunate that we found him.  He is so caring and not only does he seem extremely knowledgeable and a doctor that wants to ‘help,’ but he also is a doctor that has incredible bedside manners.  He has called me from Georgia and spent a lot of time on the phone with me.  He doesn’t rush me off the phone and lets me ask as many questions as I need. He never calls a question ‘stupid’ and no matter how many times I may ask the same question, he answers every single question as thoroughly as possible.  He is one of the nicest doctors I have ever met.

This doctor understands how much suffering I am going through… not just medically and emotionally, but financially as well.  In fact, when we asked him if we should come down first to ‘talk and discuss’ everything and let him see everything before we come down for the actual procedures, he insisted that it was a big ‘waste of time.’  He said to us ‘why come here to talk and go over things when we can easily do that over the phone?  Why waste both precious time and money when we can easily do this over the phone?’  He was right too.  We could discuss everything over the phone and therefore we didn’t have to go down and discuss it face to face. It would definitely save time and money.

The doctor feels so bad about what is happening with me and willing to do whatever he can to help me.  The doctor is planning on us coming the week of June 10th.  He is going to be doing a very intensive ketamine dose on me for a couple of days.  He will be hitting me with doses that are so very high and doses that I am not used to… could be like 400 mg or more.   He said that I will probably get very sick from it and he said that I will probably get even a higher unheard dose the following day.  But, he said that hopefully it will help.

During this time, I will not just be having the ketamine coma but I will be getting Lumbar and Stellate Sympathetic Blocks, as well as a Celiac Plexus Block.  A sympathetic block is an injection of local anesthetic into or around the sympathetic nerves to block the sympathetic nerves on the same side as the injection either in the upper (stellate ganglion blocks) or lower (lumbar sympathetic blocks) extremities. This may in turn reduce pain, swelling, color, sweating and other unusual changes in the lower extremity and may improve mobility.  A Celiac Plexus Block is a block that is given to the bundle of nerves located behind the stomach and in front of the diaphragm, which innervates and can improve pain symptoms from a number of organs including stomach, gallbladder, kidneys, liver, pancreas, adrenal glands and blood vessels. Even though I had both these kind of blocks before and they didn’t work, I will be getting them again but they will be totally different.  Stellate ganglion blocks or sympathetic blocks helps to relieve pain and ischemia, and is usually performed with local anesthetics followed by therapeutic blockade with steroids and neurolytic agents.  However, instead of getting these steroids or neurolytic agents, the doctor will use an adjuvant known as ketamine instead, which will work better. In this way, the nerves will actually get a direct dose of ketamine as well and instead of the ketamine being infused throughout my body and being dispersed throughout, it will be put directly on the nerves as well. This has been really effective as there was significant pain relief of longer duration with significant rise temperature. It has even showed to heal gangrene limbs. So hopefully it’ll work.

In addition, I have only really gotten ketamine when I had the ‘comas.’  Ketamine is known as ‘special K’ and is basically illegal and a street drug.  But this doctor said that he would give me ketamine that I can take at home that could possibly help me and help make me also more comfortable as well.  He told me that he will give me ketamine nasal sprays and ketamine lotions.  In this way, not only will I absorb the ketamine through my skin when I apply it as a lotion so it goes onto my nerves, but when I spray the ketamine in nose, it will be like short quick bursts but extremely helpful.   It could honestly be like taking like 20-30 mg, which can make a big difference especially when you are suffering in so much pain.

Besides receiving the ketamine in these large infusions, there is possibility of having a pump of ketamine being connected to me 24/7 and I could wear it as a fanny pack so that I can constantly be given a low dose of ketamine all the time.  In this way, even though I won’t be given a large dose like I would in Georgia, hopefully this low dose will help me in the in-between doses in Georgia and let me live more at home and make me more comfortable and tolerable to live.  However, when I told him that no doctor in my area performs this treatment, he said that he would ‘talk to my doctor and explain the procedure to him’ and see if he would be ‘willing’ to take on the treatment and cover him while I am in New York.  Since my doctors up in New York don’t have the equipment, this doctor was also nice to also volunteer to give me the equipment that I would need because I would probably have no other way of getting it.   This way I won’t have to live in Georgia, and between the really high dose ketamine comas, I will be able to hopefully function and survive because the ketamine I get 24/7 every day in the fanny pack will buy time and help. It’s so much and complicated.

I was also told that the doctor could possibly put a pump in me.  You don’t know how good that was to hear.  I have wanted a pump for so long because not only will it stop me from having to take all those pills (over 50 pills) that I am having difficulty taking and swallowing, but it will make them more powerful and easier to take.  It will also enable me to get medication that I normally cannot take because it doesn’t come in pill form such as the snail venom, which has been proven to help with my illness especially with my illness.  Finally, the pump is supposed to cut down on the side-effects of the medications as well so hopefully I won’t get as many side effects as I currently get from all the pills I take nowadays. However, since I am so very small, all the doctors that I have seen said it was ‘impossible’ to put a pump in me.  This doctor said that he has put pumps in patients that are very thin and that doctors have said it was ‘impossible’ to do so.  He said that he put pumps in 80-pound patients and found places that doctors couldn’t.  Granted I am not 80 pounds, but I am hoping that he can really still find a place that will be able to still be doable.

The doctor is planning on us coming the week of June 10th.  He is going to be doing a very intensive ketamine dose on me for a couple of days.  He will be hitting me with doses that are so very high and doses that I am not used to.  He said that I will probably get very sick from it and he said that I will probably get even a higher unheard dose the following day.  But, he said that hopefully it will help.  Depending on how I do, it will determine the next step.

I am really hoping that this doctor will be able to help me.  I really have high hopes for him because he told me about how he had another patient that was basically like a ‘stroke’ victim when she comes to him every six months and after he treats her, she walks out of there ‘normal.’  The doc said that he has a patient that he treats that had the out-of-the country coma and comes in like every six month on a stretcher. Like I said, she comes in like a stroke victim and is in so much pain and so paralyzed like me. She also has severe autonomic dysfunction like me. But after he gives her treatment… She walks out of there like a CHAMP and it buys her like 6 months. These are like ‘boosters’ to that huge ketamine coma she had out-of-the country. So I’m really hoping he can help me because he said he knows exactly what I’m dealing with between the pain, GI problems, and autonomic dysfunction and everything else. So cross your fingers. At this point I have really nothing to lose because things are just so horrendous and I need treatment so desperately and immediately.

So that is the upcoming plan.  I just hope that everything works out.  It is going to be really hard on me and my family in the next few weeks because we are going to be doing a lot of traveling.  We are supposed to be coming back from Minnesota on the 1st of June and we then leave basically on June 9th to go to Georgia.  We really get no time to be at home because by the time we get home, it is time to leave again. In addition, we are supposed to be leaving for California June 24th but who knows now because of Georgia getting put in the pot.  It was really important to go to California because it was supposed to ‘buy’ me time, as they were going to try to put tubes in me again and try to ‘feed me’ and nourish me since I am so very low in weight and deteriorating so much.  I don’t know how we are going to manage to do all three trips because I don’t know how we are going to afford all three and how my dad is going to be able to take off from work so much time.  But California will be extremely important and needed especially if nothing really works out well at the Mayo Clinic or at Georgia.

I am really nervous because I really don’t know how we are going to manage all this and I know how much I am running out of time.  The doctors have already said how much I need help and if it isn’t sought soon… something seriously bad is definitely going to happen.  They are so afraid that I am not going to even make it through the summer if something isn’t done.  But I know that going to Mayo Clinic, Georgia, and California means a lot of time away and money that dad misses out on because dad is unable to work. I know how difficult it is when we just go to one place and how hard it is for dad to catch up on his work when we go only to one place for a week, now we are going to three places and each place is for such a long time too (Mayo is for a week, Georgia is for a week, California is for 2 weeks). But what stinks is if I don’t go to Cali in June… I’ll have to wait until like July 22 and that’s a VERY long time and if nothing works it helps in Minnesota or Georgia… Who knows if I’ll make it that long?

Well, with all these upcoming plans and such, I really need help financially since nothing in this world is ‘free.’  I was hoping perhaps mom or dad might have won the 600 million Powerball, but obviously we didn’t.  So… that only means one thing… I need help from others if all this is going to occur.  I have tried various ways to try to bring attention to my cause and try to find various ways to fundraise.  However, nothing really has come about.  So, if you can think of any ways or can manage to bring attention to my cause and website for donations, I would really appreciate it.  I desperately need this treatment and I am walking a tightrope that is ready to snap.  I don’t want it to break yet.  I still have too much to live for, as I still have the ambition to become a doctor and help others.  Please help me in my fight against my disease by raising money so that I can receive the treatment that I need to survive.  While the cure of my illness sometimes seems a long way off, one day my disease will be eradicated through your help of bringing awareness to my cause and so I can get the appropriate treatment.  Hopefully, there can be an end soon. You don’t stop hoping because if you have hope, you can do anything!

Well… gonna get going. Have a busy next few days.  I am gotta pack and everything.  Looking for some good movies and books to bring with me.  If you have any suggestions, please let me know.

Love,

Fallon

Leave a comment »

May 19, 2013

ImageHi-

 Well, it is getting so close to the end of the month of May and you know what that means?  The Mayo Clinic is just around the corner.  So many things have been occurring lately, so I just wanted to share some things with you… especially since I have been feeling worse than usual.  I wanted to share it with you too just in case something happened because there are so many times I don’t know where I will be in the morning (in the hospital or at home), or even if I will be still on this earth because of how badly I have been feeling. So at least I know that I have kept you somewhat up-to-date about what has been occurring and you won’t be left wondering.  I am also not feeling well tonight, so I was hoping that writing to you would take my mind off of all that is happening and would help pass the time since the nights are so long and lonely and excruciatingly painful.

 The pain has really gotten really horrible and unbearable.   I am trying to hang on but it is really getting difficult.  I keep holding on hoping that something ‘good’ is going to happen, but it is really getting hard to do so… especially when things are so unbearable lately.  My body I really deteriorating, and I am in more pain than ever. I suffer 24/7 and never get a rest from it. I have been suffering so much that all I want to do is sometimes take meds and more meds… just to get out of the pain, even when I max out on them. However, what stops me from actually doing it is that I am in too much pain to actually get off the couch to do it. 

 Between the change of weather and then the accident, it really has taken a HUGE toll on me and really has made things so much worse.  I suffer in pain from the very surface of my skin to the deep core of my bones. I am either too hot or too cold, and that only leads to further exacerbation of my illness.  When I am too hot, I can’t get any relief because I can’t sweat and therefore I get a blister feeling all throughout my body and when I am too cold, I can’t really warm up because I can’t put on extra clothing or use a blanket because I am too hypersensitive to pain.  In fact, I can’t even sleep with a blanket. 

 ImageLiving with me is so complicated because I need everything ‘perfect.’  I need the perfect temperature and as a result we cannot open the windows.  I can’t tolerate the humidity and I can’t tolerate the swing in temperature.  So basically I need either the heat or air conditioning on in order to maintain the 72-74 degree weather or I am in even more pain than usual.  I can feel the slightest change and my family calls me a thermometer because they are amazed how I can tell the exact temperature or when there is a change of temperature… even of a degree. It really stinks because this is the time of year when people love to have their windows open so that they can get fresh air.  However, we can’t have that in my house because of my illness.   To make matters worse, when I need the air condition on, they have to make sure that it doesn’t blow on me because that also causes me extreme pain. 

I can’t do anything without suffering.  I can’t eat, sleep, go out, etc. without suffering. Not only am I suffering from pain, but I also can’t eat either.  It has gotten to the point that even the few things that I can eat (the egg whites and ices) has become impossible.  The osteonecrosis is really affecting me.  I am getting more and more lesions in my mouth and having the bones protrude through them, which makes it even more impossible to eat on top of the severe pain from all the GI issues I have.  My stomach has been giving me debilitating pain that I have been laying on the couch all curled up lately because that is all I can do.  I am also having a really hard time going to the bathroom lately and it feels like I have a blockage.  My stomach keeps getting very distended, which makes it even more unbearable to breathe and move.  It is like I need someone to “pop” me.  I also have been gurgling a lot and my stomach has been making these weirdest noises like there is a whole in them and such. 

 ImageNot only am I suffering physically, but I am also suffering emotionally as well.   I hate looking into the mirror because I look like the creature from the black lagoon.  I look emaciated and look worse than someone from a concentration camp.  I am so thin that you can basically see every bone protruding in my body… from my skull all throughout my body to my legs.  There is no muscle tone left on me anymore and the skin basically just sags on me.  I look like a stegosaurus because my spine protrudes like the spikes on the back of a stegosaurus.   I change colors like a chameleon and it has gotten so bad that my legs don’t even resume a somewhat normal coloration when elevated.  The doctors are even afraid that my left leg might have to be amputated if it gets infected because of how badly it looks.  Thank goodness for clothes and makeup because at least when I am around people I can try to hide all the ‘scariness’ of me.  I can look somewhat normal with clothes and makeup.  I always try to wear clothes and makeup that make me look my best because I don’t like people seeing the REAL me because it is too scary and also because you feel your best when you look your best.  So I hope that I always will feel better when I look better.

 The worst part of it all is that my memory hasn’t been doing very well.  Out of all the things, I never thought my memory would go.  I used to have photographic memory and now my memory is really bad.  I used to have an ambition to become a doctor so that I could help others.  Even though I would love to still become that, I wonder if that is still possible.  People say that the memory problems is probably because that I have ‘too much on my mind’ and because of the medication.  However, I wonder if that is really true and wonder if my memory will really come back if and when I get better.  Even though I was robbed of so much by this disease, I never thought it would take that as well.  

 I recently went to the Orthopedist because I have been in tremendous pain especially since after the accident and we had to rule out any fractures.  Of course though if there was any fractures there really wouldn’t be anything really that they could do anyway because with my illness they can’t put a cast on or immobilize a limb because that would only spread my illness and make it worse.  But we had to know so we knew exactly what we were dealing with especially since I have been having cramps and spasms in my back and it has been making it extra hard to breathe.  They wanted to make sure it was really just due to my illness and not because of anything else.  Well, after taking the x-rays and such, we found out that not only do I have severe osteoporosis throughout my body, but they think I might have a small crack in my bone in my left leg.  But like I said before, they can’t do anything because of my illness.  So we just have to leave it alone.  

 Wanna hear something though?  When I went to the doctor, the doctor asked me if I went to the hospital to get checked out because of the accident.  When I told him that I didn’t, he was like “Good call because it isn’t like they could have done anything anyway.”  I was kinda glad he said that because at least he confirmed that I made the right decision. 

 Speaking of the osteoporosis though, I knew that I had severe osteoporosis.  That is why I have been having those bone infusions.  However, they think that the bone infusions are partially responsible for the osteonecrosis.  I am now in a dilemma because I am due for another bone infusion and we don’t know if I should go for it because of that fact of possibility making the osteonecrosis worse.  I need the bone infusion more than ever because of the osteoporosis and the doctors are afraid that I am going to get a life-threatening fracture, but I can’t afford for the osteonecrosis to be made worse.  You know?  So I don’t know what to do because even with the infusions I have been losing a lot of bone.  I did have a great reaction to it initially.  On the first dose I ever took it grew back like 30% of bone.  However, since that first dose I have been decreasing in bone even with the doses.  Yet, the doctors claim it would be a lot worse without the infusions.  So I don’t know what to do.  I just know I have to make a decision soon because I am due for it.

 Well… let me tell you the very latest, which was the real reason that I wanted to write! To begin with, it is this time next week that I will hopefully be leaving for the Mayo Clinic in Minnesota.  I really hope we get to go, but I am not going to be counting on going until we are physically on the plane and headed to the hospital next week because anything can happen in the meantime. Even though appointments are already scheduled, the hotel is already reserved, plane tickets are bought, etc. I don’t count on going until we are physically on the plane because anything can happen in the meantime and I have learned so many times to be disappointed because things just have a way of occurring and ruining things.  I don’t count my chickens anymore before they hatch.

 In fact, I am lucky that I looked at the plane tickets today to be honest with you because if I didn’t, I would not be going to the Mayo Clinic.  With everything occurring, I booked the wrong tickets for the plane.  I don’t know how I did it, but with everything occurring with me (between my illness and having all these troubles with finances and trying to find help and such), I made such a huge mistake.  In fact, if I didn’t check the tickets, I would have been flying to Rochester, New York instead of Rochester, Minnesota.

 I just can’t believe what I did.  I can’t believe I could make a mistake like that.  That isn’t a minor mistake either.  I would have ended up going to another part of New York instead of flying halfway across the country to the Mayo Clinic in Minnesota.  Apparently when I saw “Rochester,” I thought it said Minnesota instead of New York.  Stupid me!!  I don’t know how I could make a HUGE mistake like that.  It only showed one thing that I have way too much on my plate and I can’t do it anymore.  When I realized what I did today because I was getting things organized and getting the flight information prepared so that we can get people to take us to and from the airport, I totally freaked out because I knew how close it was to leaving for the trip and how big of a mistake this was. It got worse too especially when I found out even worse news… the airline we were flying doesn’t fly to the place we need to go.  Of course it also had to happen on the weekend too so nothing was open.  I couldn’t call the hospital to find out information about what to do because the concierge desk was closed, and I couldn’t call a lot of other people to see what to do because of the fact of it being a weekend.  I knew how important it was to get these tickets changed because we needed to get to the Mayo Clinic and yet, everything it was a Saturday and everything was closed. 

 I totally lost it when I found out that the airline that we were flying didn’t fly to Rochester, Minnesota, which was the destination that we needed since that was where the hospital is located.  The closest the airline would get me is to Minneapolis, Minnesota, which is about 80 miles from the hospital.  I had to stay with the airline that I had because I had the tickets already.  Plus, if we could get new tickets for a different airline, it really paid to stay with this airline because the airline we are traveling, which is Southwest, is the only airline that doesn’t charge us if there is a change in itinery.  With me, that is so important because I can’t begin to tell you how many times we have had to change the plane arrangements whether it is because we have to come home early or later (we finish up earlier than expected or need more time), or whether we have to delay the entire trip because I get sick or because of financial reasons or something. Sometimes if we finish earlier than expected, we like to come home earlier than waiting it out because there is nothing else to do and why pay for a hotel stay that is not needed.  This way we could go home earlier and my dad and I could get back to our normal lives and my dad can get back to work instead of paying the extra money for the extra hotel days that are not needed.  However, if we went with a different airline, we would be forced to stay there and pay for the hotel because not only will there be a change of itinery fee, but to change the tickets to an earlier date it usually costs mega money.  The current airline that we are on is the only airline that doesn’t charge for the change in itinery or have a fee difference even if changing to a different day. 

 Of course there were different options that we could have done, but everything turned out to be so expensive.  I was really freaking out because I thought that everything was taken care of already with the finances, as I thought everything was basically ‘paid’ for in terms of getting there (the plane tickets). Now I realized that there was going to be extra costs already, which was money we didn’t have because we were already going to the Mayo Clinic on limited funds because we didn’t have extra money on hand. 

 One option that was a possibility was to fly to Minneapolis on the current tickets that we had and then take a shuttle flight to the remainder of the distance to Rochester.  Of course that would mean buying a new set of tickets on another airline to take us from Minneapolis to Rochester, which would mean more money.  It probably would honestly have been one of the better options because I can’t really sit in a car and travel 80 miles because that is a 2-hour drive almost and it isn’t like I won’t be traveling prior to that trip either. I would have already suffered the trip on the plane to Minneapolis, and the trip there will probably have killed me already.  Traveling is definitely not easy on me and it really takes a HUGE toll on me.  I am really hypersensitive and therefore, I really get hit hard when we have to ‘travel.’  Not only do I suffer in pain more than usual, but it also really wears me out both physically and emotionally.  We already had a stopover when we went to Minneapolis, so we already had a huge commute there instead of it just being a hop over there.  A simple nonstop trip that could be reachable in a possible 3 hours is taking us close 5 hours and will have a stopover too.  But you gotta do what you gotta do to get tickets that we can afford.  But to have gone through all that traveling and then to first have to travel by car another 2-hours, it really is going to be mega suffering on me.

 However, we really didn’t have a choice but to drive.  When we priced flying from Minneapolis to Rochester, they wanted close to $400 per a person even though it was so close.  I don’t know if it was because it was last minute or anything, but it was just way too much to be bothered with. Plus, when we thought about it too, it wasn’t a great idea because if we did have to change the itinery, we would run into more money too because even though the flight from Minneapolis to New York would be covered, the flight from Minneapolis to Rochester wouldn’t be. 

 As there was no other option but to drive, we priced renting out a car and that too was expensive. We really didn’t need a rental car while we were there because everything that we need to do is local and in the area.  Even if we need to go somewhere, the hotel staff said they would have transportation available for us because everything (whether it is go to the hospital, sightsee, etc.) is all in the area.  So since a car is totally not necessary, we figured we would take the car from the airport to Rochester and leave the car there.  Then when we need it again, we would pick the car up and drive it back to the Minneapolis.  This way we could avoid accruing the cost of the car while we were there since we didn’t need it and we wouldn’t have to pay for parking at the hotel for it either.  However, they wanted like $200 for the day.  Could you believe it?

 I was really freaking out because we didn’t have really that much money to ‘play’ around with.  I then contacted the Mayo Clinic to ask for some other options because my friend told me that they might have an option since they are not like any other hospital, as they ‘cater’ really to the patients and try to help them out as much as possible.  When I contacted them, the concierge desk was closed since it was a Saturday and even though they really wasn’t supposed to help me because the department was closed, the person that I spoke to helped me out anyway because she just happened to be knowledgeable on it.  She told me about a service that they offered that would cost me $55 per person and it would take me from Minneapolis to Rochester.  It wasn’t ‘free,’ but at least it was more doable than spending all that other money and at least if there was a change in itinery, it wouldn’t really be affected either. 

 So, thank goodness that was taken care of.  Now we are basically all set.  Only bad part is that we are going to have to travel the 80 miles.  But, they are sending a van for us and it is supposed to have Wi-Fi, so hopefully between the roominess of the van (it hopefully won’t be as cramped as a car) and the Wi-Fi to keep me busy, it won’t be so bad traveling the 80 miles or close hours to the hotel. I can’t believe that they offer this service from picking us up at the airport all the way to in Minneapolis to bringing us to the very door of our hotel. 

 I guess my friend is right… this is no hospital like the others.  I always knew that this was a TOP hospital in the country and always knew that they only took on the sickest and rarest cases, but I really didn’t quite ‘know’ how out of the way they went for their patients. The Mayo Clinic in Rochester, Minnesota, has been world renowned for the quality, accessibility, and efficiency of its medical care for many decades. For many who travel there, it is their last bastion of hope in finding treatment for a complicated or terminal medical condition. As a result, they want you to feel as comfortable as possible and they make it feel as much as ‘like home’ as possible.  They make it so that you aren’t bored and that it isn’t all about being in the hospital.

 I already told my dad that he is in for a surprise.  I heard how much this hospital is amazing, and I can’t wait to see it.  They are supposed to have these “Care Pages.”  They are computer stations in the reception areas of all the departments of the hospital that you can use free of charge. One great means of keeping people back home posted on a patient’s progress is through Care Pages. Once you are registered as a patient you will be able to access the Mayo Clinic Care Pages website and create your own page about the patient and give updates to family and friends. I don’t know if I am going to use it since I have my own website though.  I will let you know. 

 I also told my dad about the ‘subway’ system that they have there.  I told my dad how underground tunnels basically connect everything there.  Although it is called a “subway,” there really aren’t any trains to be found.  Instead, they are a bustling underground maze lined with numerous gift shops, restaurants, cafes, and gourmet coffee shops, as well as tunnels that connects the Mayo, Gonda and Charlton buildings, and Rochester Methodist Hospital.  At least patients don’t have to worry about the weather outside, which is a big plus for me because since I am so hypersensitive, I get so limited when I can go out because the sun burns me and I can’t tolerate the heat, cold, rain, humidity, etc.  So at least I will get to do things without having to suffer all that extra pain of being on the ‘outside.’  I heard there are many things to do via these underground walkways too including shopping at the mall and restaurants (of course I don’t have to worry about the restaurants though because I can’t eat).  Another thing that we can do is listen to live music performed in the amphitheater. I can’t imagine how I will be able to access all this stuff by going through tunnels. I can’t wait to see everything.    However, I also was told that if the weather permits, one end of the street houses numerous shops, outdoor vendors, manicured gardens, and benches to relax on. I can’t wait to see it all!

 We have traveled to so many doctors and seen so many specialists and we are basically at the bottom of barrel.  You know you are especially sick and desperate when you go to the Mayo Clinic because they only take the ‘sickest’ of patients and patients that can’t be helped other places.  In fact, all appointments are prioritized on the basis of medical need.  Usually, patients have to to wait a few months to be seen unless you are gravely ill or have special circumstances.  Well, I must be in really bad shape because I was given an appointment within 1-½ months.  I guess it really is an emergency when your whole entire body is shutting down and you only weigh close to 60 pounds.  So just keep your fingers crossed that they will be able to help me. If nothing else, maybe I can help others in the future because as this is a ‘research’ hospital, I already signed the consent that they can use my records and data for their research to help others.  So… if I can’t be helped, maybe at least others can benefit from me and not suffer like I am.

 ImageSo… hopefully we will be off to the Mayo Clinic on Monday.  We are supposed to be going for the entire week. I am going with my dad like usual, and my mom will man the fort at home.  I really am going to miss my mom, but I will speak to her frequently on the phone.  I hate how I have to split up my parents.  But they make so many sacrifices just so I can get the treatment I need, which includes being apart.  I am really hoping that they will be able to help me. I am really desperate because I am rapidly deteriorating and if something isn’t done quickly, I am really afraid I am not going to make it much longer.  Even the doctors have said that unless something isn’t done soon and quick, they fear I won’t make it much longer.  I was already told that I definitely won’t make it through the summer with the rate of deterioration that is happening.  Things are just getting horrendous. 

 In addition to going to the Mayo Clinic this upcoming week, I am also most likely going to Georgia.  As I said before I am rapidly deteriorating and really needed the ketamine coma even before I got into the car accident that took place last week.  However, now that I recently got into the accident, the disease has really become worse and exacerbated my illness immensely.  Whereas I was suffering before, I am suffering so much worse now because any trauma to my body can spread and make my disease so much worse, and getting hit by a 18 wheel tractor trailer is really traumatic.  So, whereas I needed the ketamine beforehand, I need it more than ever now.

 Even though I have been getting ketamine every other week in New York, the amount of ketamine that I need is way too great and is not FDA approved in the United States.  As a result, I need to go out-of-the country to get this dose.  Yet, since I can’t get there right now, I am planning on going to Georgia so that I can get a more intensive coma than I am getting in New York.  Although I won’t benefit like I would if I would be getting the coma out of the country, I would be getting a much higher dose than I am currently getting in New York, which will hopefully help me and save me.  Hopefully it will turn things around to a point and help buy me time. 

 Thank goodness I found this doctor. I can’t tell you how much I am grateful for finding out about this doctor because I really need a much higher dose coma immediately.  Knowing how very sick I am, I am fortunate that he won’t make me wait very long for it either.  The doctor seems extremely nice and so does his office staff.  They really have gone out of their way to help me.  Not only is the staff always available to speak to me, but the doctor is as well too.  I was told he has excellent bedside manners and was told that even though I was told in the past that I couldn’t get a pump because I was too ‘small’ and there was no where to put it, I was told that he might be able to put one into me. I am really hoping because that would really help a lot.

 I really need a pump, but unfortunately many doctors told me that I couldn’t get it because I was too small.  I am on very high doses of medication and I get very bad side effects from them.  Not only will a pump make my meds stronger and help me more because intravenous drugs are more potent and work better on me, but hopefully I won’t have as bad as side-effects as I have by taking meds orally.  In addition, whereas the meds I take are compounding the problem of not eating and shutting down my stomach and GI system, hopefully the pump will eliminate or decrease that.  Its bad enough I have the severe autonomic dysfunction and gastroparesis alone… I don’t need the medications compounding the problem.  Also, the pump will make it so that I don’t have to take meds at all either.  You can’t imagine how much that will not only help but be a gift. I take over 50 pills daily and basically eat pills for breakfast, lunch, dinner, and snacks. 

 However, it has gotten to the point that I am having so much trouble taking them due to my illnesses, as I can’t swallow them anymore.  In the past, I have used drinks with carbonation to help get them down, but nowadays that doesn’t even work.  The gastroparesis and autonomic dysfunction has gotten so bad that it really has affected my swallowing and esophagus.  I can’t even swallow them even despite the carbonation and it is basically a battle to even get one pill down let alone all of them (over 50).  I am having such difficulty swallowing that even getting down ice pops is difficult.  It would be so great not to have to worry about swallowing them anymore because I won’t have to worry about worrying about what time it is because since I have so many pills I take, it seems like I am always watching the clock because I have to take the medication and I won’t have also have to choke them down.  It would be a blessing to get this pump.

 So I am hoping not only that this doctor will be able to help with the ketamine, but hoping that he will be able to help with the pump as well.  I was told that the doctor put in a pump in a person that was barely 80 pounds because she couldn’t eat and such, so he is familiar in putting in pumps in people that there is ‘no room’ for them in.  Of course they weren’t as small as me, but hopefully he can still work his magic. 

 If all goes well, we are supposed to be going to Georgia the week of June 10th.  However, I really need all the help I can get with donations.  We have been really having a hard time in that area because the bills are out-of-control.  I am really deteriorating and my dad keeps walking around the house saying how I ‘belong in a hospital,’ but to be honest with you… we can’t even afford it.  Any help that anyone can give would be much appreciated because it isn’t like I can be hospitalized in a local hospital either.  We would have to travel to another state to be hospitalized because the hospitals here in New York can’t handle my situation.  So not only would we have to worry about all the copayments of the hospital (I can’t believe how much it would clearly add up $150 per day + $200 for emergency room + $100 for each scan and procedure), but we would have to worry about the cost of the hotel too because my dad would of course need some place to stay.  Gosh… I always wonder what it would be like if money didn’t exist.

 I have tried so much to try to raise funds.  Lately I have tried again to reach out to the media and some celebrities.  I know that unless I get my story out there, no one is really going to know about it and I won’t really get the help that I need.  That is why I need you to help me as much as possible to get my website known because I am not having luck in getting the attention with the media because you know the saying “it isn’t what you know, it is who you know,” and unfortunately I don’t know anyone.  But, I figured it would be worth a try again to try to reach out and see if they would hear my story.  I have also tried contacting some TV shows including ELLEN DEGENERES, LIVE WITH KELLY AND MICHAEL, THE STEVE HARVEY SHOW, DR. PHIL, THE DOCTORS, DR. OZ, THE TODAY SHOW, etc.  I see so many people on those shows getting help, and I am hoping that I might be as fortunate. 

 I have also tried to reach out to my local fire department.  I don’t know if anything will come about, but I am keeping my fingers crossed.  I will let you know if anything does.  In the meantime though, I really was quite surprised to get an email from a very well known author.  One of my friends surprised me and contacted one my favorite authors of all times and she actually wrote me a personal email.  I couldn’t believe it.  I can never thank my friend enough for that.

 I couldn’t believe that Jodi Picoult contacted me. She is one of my favorite authors.  I love all her books.  I don’t know if you ever heard of her but she has written such phenomenal and famous books as “The Storyteller,” “My Sister’s Keeper,” “Lone Wolf,” “Between the Lines,” “Change of Heart,” “The Pact,” and more.  She has written over 20 books and some have even become a movie like “My Sister’s Keeper!”  She was willing and did let others know about me through her Facebook page and also tweeted about me.  I can’t thank her enough.  Perhaps through her, others will become knowledgeable about me and my website and maybe I can also receive further help.  Even if the people cannot donate, at least they will become aware of me and all that is happening to me. If nothing else, at least I want attention to all that is happening to me because even if I can’t be helped personally, maybe I can help others. I can show people never to take anything for granted because in a heartbeat it can be taken away from you and always appreciate what you have because you never know when you won’t have it.  I never thought that I would never be able to walk, eat, take a shower, be touched, etc.  After all, these are basic functions of life.  I can also show people that as long as you have your ‘health,’ you have everything… so when people think that things are horrible in their lives, let them realize that things aren’t really as bad as they think as long as they have their health!     So, if you look at her Facebook page, you will see a mention of me. 

 I also want to share a little something with you.  I have been seeing ghosts and telling my parents that I saw my grandma who had passed away.  We were extremely close and we were supposed to be there for one another and stay alive for each other.  We called each other ‘peanut butter and jelly!’  However, she passed away last year.  Anyway, my parents always said it was the drugs that I was on and even though they said they ‘believed’ me, they really didn’t.   But they finally believe me now after all that has happened in the last few days.

Image My grandma’s room is totally empty. It has been empty for over a year and there is nothing that remains of hers.  Everything is stripped down to the bare furniture and not even the mattress is in the room.  Anyway, I was in the room the other day and my dog kept going onto the bed and going to where she laid and was whimpering.  He then laid down right where she usually did and remained there.  It was totally weird because he never did something like that before.  To make it ever weirder, the other day my dad was downstairs and he heard crying.  Well, he we went into my grandma’s room because that was where the crying was coming from and this time he saw my cat exactly on the same place on the bed crying.  How weird is that?  Now my dad totally believes something is going on and my grandma is here. After all, she said she would never leave my side!

Image Well, I guess I better get going because I am not feeling well and I should rest.  Tomorrow my mom and I are supposed to plant the present I bought her last week for Mother’s Day.  I bought her a plant in a watering can.  It is sitting on our mantle and we are planting it in a wine barrel that sits by our door on the porch. They are supposed to bloom every year.  I bought it for her so that every year that they bloom, she can remember me. 

 The next few days are going to be super busy because I have to get everything situated for Minnesota.  I want to download a few movies, games, books, etc. for my iPad so that we will have something to do on the plane because those trips can be long and boring.  At least it will give us something to do.  If you have any suggestions, please let me know.  Even though it is going to be a long trip to Minnesota and hard on me, at least I am going with my dad and will get to spend some nice quality one-on-one time with him.  I love being with him.  If it wasn’t for him, I certainly wouldn’t be here today.  He is not only my dad, but he is my best friend and hero.  It hurts him so much that he can’t do anything to make me well.  Everyone knows that if something happened to me, he would never get over it.  That is one reason I am holding on so long… I am holding on for my dad! 

 In fact, it worries me that he works so hard just to try to get me well. He works 7 days a week just to try to get enough money for us and to try to get his business to survive.  He is always so tired, and I can’t blame him because he is up at 3 AM and out of the house by 4 and then not home til close to 7 PM.  I am so worried about him because it isn’t like he just sits in the office, but he is constantly running around, as his job is all physical work basically and he is no youngster.    I just don’t want anything to happen to him because he isn’t a youngster and he never rests.  That is one more reason why I am glad that he coming with me to Minneapolis.  At least he will get a somewhat ‘mini vacation’ and hopefully be able to rest a little.  He really can use it.  After all, when I go for my ketamine treatments, he also uses that time to ‘sleep’ too.  I only wish I could make it better for him and he didn’t have to work so hard because he is at the point in his life where he should be able to take a easy and enjoy himself a bit.    

 I hope that everything is good with you.  I can’t believe that the unofficial start of the summer is next weekend.  If only the weather would be more like it.  I will keep you all posted on what is going on.  If you can think of anything to help with raising money, please let me know.  Thanks so much for everything.  Until next time!

 Love,

Fallon

Leave a comment »

May 10, 2013

ImageHey-

 Just wanted to say HI because I know you wrote back. I just have some news to share because some things have happened that I want you to be aware of because I haven’t been doing well and if something should happen… at least you know the latest.  Its going to be brief though (Well planning it… but with me you never know.  I always have that intention but it never works out that way).

 Things haven’t been going well at all. In fact… they are worse than ever.  I am really weak and honestly… I don’t know how much more I can take. I am in so much pain that I am literally willing to do anything to get out of the pain.  All the pain meds in the world aren’t even helping.  I am maxing out on all pain meds and even overdosing on Tylenol.  I lay at wake at night feeling so weak and in pain, and I always wonder if I am going to see morning.  Sometimes I even hope I don’t because I am suffering so very much.  I don’t just have pain… I have pain that goes from the very surface down to the very core of my bones from the tips of my toes to the very tips of my fingers and to the top of my head.  It is all throughout my body and nonstop.  

 Perhaps the pain lately is worse because of everything that has happened in the past few days.  I will tell you in a minute about what has happened because you are not going to believe all that has happened.  However, with everything that has been occurring with the pain, I have even said that overdosing on Tylenol better ‘knock’ me out because if it doesn’t… I don’t know what I would do.  I really understand why they call this illness the “suicide” illness.  This illness is so painful and enough to make anyone kill themselves.  It is the most painful thing you can experience and it is nonstop.  It has even been ranked on the pain index scale as being the most painful thing… more painful than amputation, childbirth, cancer, etc.  When you never get a break from it (not even for a second), you can imagine how it can really wear you down.  With all that I am suffering from, I would much rather ‘move on’ to a better place so I don’t have to suffer, but I don’t think I would intentionally do it because I am too fearful.  I have too much to live for and I am still hoping that I will get better.  Even though I am suffering so very much, there is still that tiny bit of hope that I am going to get better still and still going to be able to live out my dreams of becoming a doctor, having a family, living a long, successful, and healthy life without pain, etc.   Plus… I am so fearful of doing it because knowing my luck, if I tried killing myself… I wouldn’t be successful and I would end up in a worse state than I already am in.  After all, there are no guarantees in life and there is no guarantee that I would be successful if I tried to ‘end’ it.  My luck I would end up in a worse shape and I would never want that.  So, I am still hanging in there… hoping for that day when I don’t have to suffer anymore even though it is getting harder and harder.

 However, I do have to tell you that it is getting really bad and I am getting really weak. I know I have said that numerous times already, but to be honest… I just can’t take it anymore and have come to a conclusion.  In fact… it is this conclusion that is partially the reason why I am writing to you tonight because if something should happen and I have to do what I said I am going to do, I want you to be aware of all that is happening.  Since things are so very bad and I cannot take the pain anymore, I have totally basically ‘gave in.’ I just can’t fight it anymore with staying out of the hospital and I can’t fight the pain.  I am just so weak.  It’s at the point that I can barely move and I have to basically have my dad carry me up to my room because I am just so weak.  Not only am I suffering from the intense pain down to the bone, but I am also so weak and feel like I am just going to collapse.  My legs just feel like they are going to break in half like twigs especially if I stand on them because they are so very weak.  My heart bothers me, as I get painful sensations in it and weird feelings from the abnormal beatings.  I even have difficulty breathing because of all the spasms around my lungs and the aspirations that are culminating in them.  Every time I try to breathe I hear gurgling and feels like there is rice in my lungs.  It is just not a way to live.

 Therefore, I just can’t hold on much longer.  It is at the point that I wonder at night if I am going to see morning because I am so very weak.  I always make sure that I say to my parents that I ‘love’ them and I tell God to take care of them if He should take me because I want to make sure that they know how much I love them and make sure that they are taken care of in case something should happen.  That is how much I feel like I am going to go.  

 I have come to the conclusion that I just can’t fight it much longer and even though I didn’t want to go to the hospital and such, I just can’t fight it anymore.  I didn’t want to go to the hospital because of the money issue and I didn’t want to remain the rest of my life in the hospital, but I don’t know what other choice I have.  People wonder why I don’t go to the hospital to at least get out of pain, but to be honest… even going to the hospital doesn’t help that aspect.  There are so many times that I am in the hospital and all the pain meds that they give me don’t even help.  Nothing is worse than being in the hospital and laying in the bed being in so much pain and with my autonomic dysfunction acting up.  When that starts to act up, there is like no controlling it.  At least when I am home, I can overdose on Tylenol, scream, and complain.  When I am in the hospital, I am under their control and I can’t just take medicine on my own.  I am at their disposal and if the medicine that they give me doesn’t work, then I am left there to suffer.  I also can’t scream and cry as much as I might want to and need to because I don’t want to disturb other patients even though it would be quite understandable given the circumstances.  But I wouldn’t want to have it done to me by someone else screaming their heads off, so I don’t want to do it to other people.  I know how annoying it can be.  So… that is just another reason why I would rather stay at home than go to the hospital because besides the financial reasons (it costs me like $150 per day in copayment + $100 for each scan/test/procedure), at least I can be in control of my own meds.

 But like I said, I just can’t do it anymore.  I am weak and besides my body suffering in pain, it is really weakening and deteriorating.  My bloods are dropping and my heart and other organs aren’t doing too well.  Therefore, I have concluded that if my bloods drop further, I am going to ‘give in’ and go to the hospital this weekend.  I have the doctor in the morning and probably will get my results back later today.  My bloods have been dropping lately and to be honest, I am in a state where I can easily have cardiac arrest because my bloods are so very low.  Even having an arrhythmia is very possible.  I really cannot afford them to go any lower and if they did drop, the docs would probably want me admitted anyway.  So, I figured that if I get the results that they did drop, and then I would just go.

 However, there aren’t many hospitals that I can go to.  Since I suffer from a very rare disease, I have to go to a hospital that can be able to handle me.  I will probably have to leave for “Hopkins” or to “Cali” or something.  I most likely won’t be able to go to a local hospital even though I would love for that to happen.  I need to go to where the specialists are and where I will be able to also be given the ketamine in case I need it.  I would especially have to have the ketamine on hand because if I ended up having to go for any procedure whatsoever, I will need the ketamine afterwards.  So, it’s a big deal to go to a hospital because I can’t just go to ANY hospital.  So I told dad that depending on what happens with the results, we might be leaving tomorrow night for the hospital.  My dad was like “just say the word.”  My dad kinda can’t wait for me to go because he thinks that if I go to the hospital that nothing ‘bad’ will happen because he has it in his head that docs and hospitals don’t let anything happen to you.  He doesn’t want anything to happen to me and he will do anything and everything to keep me alive.  He already told me that he wants to have me ‘frozen’ so that I will be around they find a ‘cure.’  This way they will bring me back and I will be alive and ok when they finally find as cure.  He doesn’t care if he will be around because the cure can be years down the line… he only cares that I will be here.    So we will see where we end up later today.

 Why are things getting so bad?  Well besides the disease taking off and worsening, I have bad news.  I got into a accident the other day.  We were driving on Sunrise Highway, which is a major highway.  Not only did we get into an accident, but we got into an accident with a huge 18-wheeler tractor-trailer.  Of course the tractor-trailer won and of course we were the ones with all the damage and the tractor-trailer walked away without a scratch.  These stupid tractor-trailers really need to learn how to drive.  

 I always have fears when driving next to these trucks because I am always afraid of them coming over into my lane.  After all, they aren’t ‘small’ thing.  Well, my fear of that came true!  We were in the right lane driving and the tractor-trailer was in the middle.  He decided to come into our lane and since we were in the right lane and had no place to go because we had the curb such on the right-hand side… we were kinda stuck with no place to go.  Therefore, we were sandwiched.  It wasn’t like we could have jumped the curb either.  So when the truck moved over into our lane, the truck clamped down on our car and ‘chewed’ us out.  Everyone (even the cops) said that the truck clamped down on our car like ‘Jaws’ and didn’t have Mercy.  They said that we must have been in his blind spot or something and as a result, he didn’t see us.  

 ImageBut either way… we were hit and we have over $10,000 worth of damage.  Thank goodness for car insurance though, right?  I of course am injured and in pain.  My disease is of course also exacerbated because any trauma always causes it to worsen and spread.  So now I have to deal with this disease worsening my illness as well.  Never a dull moment, right?  When the accident occurred, the cops moved us into a parking lot so that we could get off Sunrise Highway since it is a very busy street and a huge truck like that was blocking traffic.  Anyway the truck of course couldn’t fit in the parking lot and therefore had to park on a side street.  But meanwhile while the truck was parking, the cop was talking to me in the lot and getting all my info.  While we were talking we heard a huge bang.  We looked up and turns out that the truck hit another car.  The cop was funny because he was like “oh no… he hit another car.”  With everything that occurred with the truck and since he injured me and such, we are of course suing him.  I can’t believe that a huge 18-wheeler hit us.  

 The very next day I had a ketamine coma because I desperately needed it.  I didn’t need it just because of my disease in general, but I needed it more than ever because of the accident that occurred the day prior.  I needed it because I was in even more pain and the disease did spread and become exacerbated.  The ketamine would hopefully calm things down and stop the progression.  However, things didn’t go too well when we went for that either. In fact, things went really badly.

 When we went for the coma, we had to abort the coma.  This is the first time we actually had to do something like that because things went really horrendous.  The doctor decided to raise the dose of ketamine because of everything that was happening and given the circumstances.  However, with everything that is happening with my body and how it is weakening and deteriorating, my body just couldn’t take it.  When he gave me the higher dose, my body just gave out.  

 The doctor started the coma and my dad told me the usual ‘sweet dreams’ and ‘see you when you wake up.’  Thank goodness that my dad is allowed into the room when I am in the coma because when I first started to get them, they wouldn’t let him.  I used to listen to my iPod to keep me occupied and to block out all the bad ‘nightmares’ and bad stuff that the ketamine can give you since it is notorious for causing all these hallucinations and stuff. But since my dad has been allowed into the room lately, I stopped listening to music and such because I like to hear my dad.  When you are in a coma, you might not be able to talk or move, but you can hear.  That is why it is important to have visitors when patients are in the hospital in a coma because even though they are in a coma, they are still aware when people are present.  

 Well… I started to really feel different.  I knew something didn’t feel right and I started to get nervous.  I asked my dad to come over and give me his hand because I just didn’t quite feel right.  Of course my dad gave me his hand and when he did, I squeezed it and never let go.  Things continued to worsen and I knew something wasn’t right.  I told him to go and get the doctor, but I didn’t want my dad to leave my side.  I was so afraid of something happening and therefore, I didn’t want to have him leave.  In fact, I didn’t want to even not squeeze his hand because I was so afraid if I stopped squeezing that something was going to happen to me.  My dad said I was squeezing so hard that I was cutting off his circulation.  Thank goodness the nurse was walking by because my dad grabbed her attention and she went to get the doc immediately.  He wasn’t far away because when I undergo ketamine, the doctor can’t take on a full schedule and can’t be far away.  

 I really was having a bad reaction.  I was trying to keep myself calm.  I literally was feeling myself come out of my body and I was actually watching my life in ‘rewind.’  I felt in control initially, but after some time I was totally out of my body.  I could hear and see them, but I was not in my body.  It was really scary.  My blood pressure was skyrocketing and my heartbeat was rising too.  My pupils were also very constricted according my doc and dad, as they said I had the most pinpricked pupils.  They of course stopped the infusion of the ketamine and started giving me other meds.  

 Thank goodness things started to turn around. As things started to normalize again, I came back to my body. I couldn’t see straight afterwards.  There were like 3 of my dads.  I also couldn’t stop crying.  I was scared.  I certainly got freaked.  But no matter how bad things got and no matter how scary things were… my dad never left my side.  He stayed and held my hand throughout it all.

 In addition, the doc wanted to give me a trigger point injection into my back muscles because I am having trouble breathing.  In addition to having trouble breathing because of the aspirations and the ‘rice’ feeling in the lungs, I am having trouble breathing because I am having spasms all throughout my body, which is including the muscles around my lungs.  The doc figured he would give me the injection to relax the muscles by my lungs and this way I could perhaps breathe a bit better.  However, I had the injection before by a different doc and I ended up blowing my lung out.  The doctor, even though it was a different doctor, ended up puncturing my lung and as a result, I had to go to the hospital and have three surgeries with chest tubes and everything.  They couldn’t get my lung to stand up at all.  It was one of the worse experiences I could have ever had.  I never want that to happen ever again.

 So I was really scared to do it again and was hesitant to do it even though I knew it would probably help.  The doc explained to me how he never punctured a lung and how the other doc was a ‘doophus’ and was not careful.  He explained to me how he knows how close the lung is to the surface and how thin I am.  But… I still was petrified.  Even though I knew deep down that it would be ok if the doc did do the injection, I still said “no.”  So the doc just gave me tons of muscle relaxants to take as well as more pain patches to see if they would help.  He said that if it doesn’t help that I need to come back and he would then do the injection.  

 So, that is how my life has been.  I am supposed to leave Wednesday for Florida.  However, we were thinking about postponing the trip.  We really don’t have the money for the trip and we are also thinking about going to the Mayo clinic first.  This way we will have all the information from the Mayo to share with the doctor.  After all, even if I went to Florida to see the doctor for the coma, I won’t be able to have the coma til after the trip to the Mayo Clinic anyway.  All this trip was to Florida was for the purpose of going over everything and finalizing everything for the coma since the doctor likes to be on top of everything before doing anything.  He likes to have his t’s crossed and i’s dotted before doing anything.  He is so thorough that he even videotapes everything that he does and he does everything by the book so that there is no bias.  He is the type of doc that is so thorough and careful that you couldn’t find a loophole or a possibility of suing him even if you tried. 

 Plus… I don’t know if it is worth going to Florida because we don’t have the money for the coma right now anyway.  I would hate to go to the place to only find out that I can’t have it in the end because I won’t be able to afford it.  Even though I am hoping to raise some money so that I will be able to afford it because I desperately need it and without it I will die, I don’t know if I will be able to get it because of how expensive it is.  The doc in Florida wants about $20,000 for the coma alone and I can’t afford it on the funds I have now.  That is why I am hoping that I receive some more donations and hoping that the media picks up on my story.  I really feel like if the media picks up my story then perhaps I can get the attention that I need to bring in the necessary funds to save my life.  I just don’t want to go to find out that there is something and I just can’t get it.  It is like holding a piece of candy in front of you and tell you that you can’t have it.  It is like a ‘tease’ and I don’t want it.  I can’t afford to have any more disappointments.  So maybe postponing the appointment will not only be better because I will have all the info from the Mayo to tell the doc, but I will hopefully have a better picture as to whether it will be possible because I will know more if I will have the funds since I don’t have it as of now.  You know?  So I really gotta make a decision because we leave in just a few days.  After all, even this trip will cost money and its money that could be saved and used for a better purpose.  It would certainly stink if I went there also this time and then he made us come back after the Mayo to further go over what happened there so that he would know everything that happened there before doing the coma.  He is not the type of doc that does things by phone and therefore, he would certainly make us make another trip to Florida before doing the coma if he felt it was necessary, which would only mean more expenses too and it would mean also that this trip in a few days was unnecessary and a waste.  So we really need to think what to do.  

 ImageOn a better note, I got my parking permit finally.  I finally got a permit for all of New York now so that I can park anywhere and not feed the meters.  It is certainly going to be helpful, especially when we go to Manhattan and stuff because we won’t have to go crazy looking for parking and my dad wont’ have to go broke paying the meters.  Plus… he won’t have to leave my appointments ether so that he could put money in the meters.  It really is going to help out a lot.  This permit allows me to park anywhere including “No Parking” and “No Standing” zones.  In Manhattan… that is a blessing because there is always no place to park.  

 ImageWell… mother’s day is Sunday.  I really wanted to make the day special for my mom after all she as done for me.  However, with all that I am going through… we really can’t do much.  We really don’t have the money to do anything and we really can’t go out to eat either because I can’t eat on the outside.  I feel really bad because I want to make the day really special and show her how thankful I am that she is my mom.  She has given up so much for me and I can’t tell her enough how much I love and appreciate everything that she has done for me.  She is certainly the BEST mom in the world and I wouldn’t want a better mom.  I only wish I could make the day better for her but everything that I want to do for her to make it the “best” day for her can’t be done.  It is so unfair because she has given up so much for me and I can’t do anything to make it the BEST day in her life.  I am going to cook her dinner and such, but it doesn’t compare to going out to dinner and such.  She says that she doesn’t mind, but I know she really does deep down.  I only wish that I could make the day better for her.  She is deserves the BEST because she is the BEST.

 Well… going to get going.  I am not feeling well and just wanted to give you a heads up on what happened in case something should happen.  Hope everything is well with you.  As I said though, I have a lot coming up and need funds.  I am supposed to be leaving for Florida on Wednesday.  I am leaving for the Mayo Clinic in Minnesota on Memorial Day.  I desperately need funds for this, as well as for the coma.  I desperately need funds, especially if I end up in the hospital this weekend because the copayments alone will be so expensive.  

 Please continue to say a prayer for me.  Please continue to spread the word that “help” is needed. If you can think of any way to bring in donations, please tell me because I am up to anything. Thanks again for all your continued support.  I really appreciate it.  I have really been having a difficult time but knowing that I have your support behind me, it really makes huge difference.  By the way… have a good book to recommend that might help understand me better.  Its called “How to be a Friend to a Friend Who’s Sick” by Letty Cottin Pogrebin.

 Love,

Fallon

1 Comment »

May 7, 2013

ImageHi-

Just figured I would give you the latest since stuff has happened and figured it was enough to share before it was too much to write.

First off…just want to let you know that I am heading into another ketamine coma this week.  I am supposed to be going into the coma tomorrow (Wednesday), but there could be the possibility that it might be switched to Friday.  But…more than likely it will be Wednesday.  I am really kinda nervous because I am not doing so well and my bloods have fallen.  I was supposed to go for a blood test today to see where my bloods stood, but I had to cancel it because I got to wrapped up with other appointments.  So… hopefully everything will go ok.

I really can’t wait for the ketamine because I really need a break from this pain and disease.  When I go for ketamine, it is the only time I get a break.  It is like I get a break from life.  I suffer 24 hours a day 7 days a week.  I never get a moments rest.  I can’t even sleep because of the suffering and lately the pain has gone from just feeling the unbearable pain to being a gnawing sensation of pain.  So on top of all that cramping, knife stabbing, aching, bloating, searing, shooting, stabbing, throbbing, cutting, burning, radiating, etc., I am not having this ‘gnawing’ pain that is nonstop.  Gnawing pain is nonstop aching pain that will not stop.  It feels like my whole body especially my toes and feet) are being hit with hammers nonstop.  You know when you are hammering nails and you accidentally miss the nail and hit your finger instead and you feel that shrill of pain go right through your finger and throughout your entire body? That is exactly what I go through throughout my entire body all the time.   I just can’t take it anymore and this ketamine treatment is the only time I can ‘escape’ it.

Unfortunately though this ketamine treatment that I receive in New York is not permanent and cannot ‘cure’ me.  However, it is thought that ketamine has the potential to actually ‘cure’ my neurological disease and autonomic dysfunction… or at least make me a whole of a lot better if I was given the high enough dose.  However, that dose that I require is so huge that it isn’t FDA approved in the United States and as a result, I would have to travel abroad to get it.  It is an extremely dangerous procedure where they literally ‘shut down’ my entire body and fully intubate me. I would be in a medically induced coma for that time.   They keep me as a ‘vegetable’ for awhile (about 2 weeks or so) while the ketamine does its magic.

Ketamine has emerged as a viable and potent treatment for patients with my neurological disease.  Supposedly, ketamine first “turn off the pain” and then “reset the whole system” of pain transmission.  RSD appears to be caused by central sensitization and pain “wind-up,” a gradual, cumulative hyper-excitable neuronal response resulting from repeated painful stimulation of peripheral nerves. The N-methyl-d-aspartate (NMDA) receptor complex appears to play a major role in the development of this overall central sensitization; additionally, evidence shows that NMDA receptors are present in the peripheral nerves.  According to doctors, When NMDA receptors are open, calcium enters the pain transmission neuron and initiates cascades that end up making pain transmission neurons more easily fired and to be much more easily excitable.  Ketamine works because it is an NMDA receptor antagonist and that blocks that mechanism of calcium entry into cells; once you’ve turned this system off, you’ve turned off the genetic transformation that occurs with persistent pain.

Since I cannot go out of the country to get the necessary dose to ‘cure’ me, I have been going for ketamine comas in New York.  However, the amount I get is nowhere compared to the amount that I need.  However, there are 2 places that can potentially help me more than I am getting in New York and it can make a huge difference and perhaps buy me a huge amount of time.  I really need to get those ketamine comas because not only will it help with the excruciating pain that I can’t take any longer, but it will also ‘save’ my life in the sense it will buy me so much more time because even though it won’t ‘cure’ me, it will calm the nervous system so much and let it function better.  Therefore, my body won’t be shutting down as much as it is and the stuff that is happening can perhaps even be reversed.  I know it sounds bogus and is difficult to imagine, but it is one amazing drug!!

The only place that does this kind of coma treatment, which is a higher dose than I am getting in New York is in Florida and in Iowa.  I really wanted to go to Iowa to have the coma done there because I feel like the doctor is so much more knowledgeable in my illness (he is known as the “father of ketamine”), but he wants about $25,000 just for the coma alone and of course we cannot afford it.  Therefore we are kind of forced to go to the other doctor in Florida even though the treatment will not be the same as if I was to go to Iowa.  However, this doctor in Florida is covered by insurance either and is also very expensive.  This doctor wants about $20,000 for the coma.

I desperately need help from others because I need to have so much treatment done to me and time is ticking by.  I am really running out.  RSDS can be as painful as cancer, as costly as AIDS, and as crippling as arthritis.  My entire body is shutting down and unless something is done quick, I am fearing that I won’t make it much longer.  I am trying to hold on as much as possible, but it is honestly getting to the point where I can’t take it anymore.  I am in so much pain that I just want at times to cut off my legs and cut out my stomach because I just can’t take it anymore.

My legs have been so painful lately and literally remaining black no matter what I do.  Before they used to go back to somewhat normal coloration when they were raised, but that isn’t the case anymore.  I really need to have something done to help with this because they are so afraid that I am going to lose my legs. After all, when limbs are black it means that they aren’t getting oxygen.

We are planning to leave for Florida a week from tomorrow (May 15th).  We are meeting with the doctor to go over everything and to set everything up.  I have seen this doctor before so it isn’t like we are going to a ‘new’ doctor.  He is very familiar with my case and knows how difficult I am.  However, I don’t even know if I want to go because to be honest… I don’t want to go and find out afterwards that I can’t have it done because we don’t have the funds to proceed with it.  It is like being TEASED because here there is something to help me and here the doc is literally holding something that can potentially save my life right in front my eyes and yet… I can’t have it because we can’t afford it.  It is a shame how my life revolves around money and how much money dictates the world.  That is why as I always say, “If you have your health you have everything” because no one realizes how much not having your health can cost you.  It is like you have to be extremely rich to be sick otherwise you are out of luck.

ImageI really need to have something done and done urgently because I am getting really bad.  I can barely get off the couch, I am extremely weak, I am in so much pain, etc.  I get this horrible spasms and twitches that can actually send me across the room.  I can literally be sitting on the couch and when I have the spasms or twitch, I can literally fly across the room and land on the other side.  It is really bad when I am standing and get the spasm or twitch because I end up flying across the room and then falling to the floor.  It is really embarrassing too because there will be times when I am with people and I will have the hugest twitch/spasm and people will be like “What was that?”

One horrible aspect that I am dealing with right now is my memory.  I used to have the best memory out there.  I used to have photographic memory.  However, lately my memory has been getting really bad and deteriorating.  I never thought that after all that has been robbed from me (i.e. the eating, walking, etc.) and the pain that I have been experiencing that I would also have my memory taken from me. It is bad enough going through all that I have been going through already, but to now watch my brain deteriorate now… I just honestly can’t stand it.  I never thought it would come down to that.

I have been having memory problems for awhile.  However, I always thought that it was because of all that I was going through since I was going through so much and had so much on my plate.  I was under so much stress, so I thought it was ‘normal’ to be forgetting some things.  I also thought possibly it was because of all the medications that I was on because I am not on a little amount. Plus, the stuff that I am on is ‘hardcore’ stuff too like methadone, morphine, dilaudid, etc.  So I thought it was no wonder that I was forgetting things.  However, it is at the point where my short-term memory is horrendous.  I lose track of the days and where I am at times and what I said before and more.  Sometimes it will take me like 10 minutes to figure stuff out.  I can’t even remember at times what people said a few minutes ago.  It is definitely not normal.  When I realized that this was definitely not ‘normal,’ I went to the doctor and asked about it.  I also did research and found out that this is totally because of my illness.  I just don’t know if I can handle watching my brain and memory go after all that I have went through already.  I need help badly but unfortunately my life depends on treatment and that treatment is just too expensive for my family to afford alone.  That is why I am so desperate for help from others.

I found out that unfortunately, Short Term Memory Loss and RSD tend to go hand-in-hand.  Who would think that misfiring of nerves would cause a whole body to malfunction and ‘die?” As it misfires, the whole cycle of problems start.  The disease affects everything including the limbic system because that is where the nerve polysynaptic sensory fibers terminate.  As RSDS progresses, the abnormal pain of the sympathetic nervous system has an effect on the rest of the body and can finalize in total disability when the muscles, bones, skin and the autonomic immune system become involved.

RSD greatly affects the brain.  When there is poor circulation to the brain stem (which is in most cases with RSDS patients.) memory loss, dizziness, poor focusing of eye muscles, poor balance, and migraines result. These are the problems when the disease causes constriction of the vertebral arteries. There can be constant pain in the limbic system (Frontal and Temporal lobes), which also causes the memory loss.

So, like I said… we are supposed to be heading to Florida on the 15th.  Hopefully I will get some more donations and I will be able to get the comas that will help me, but who knows. I am really praying.  I desperately need it. But of course I am not counting my chickens before they hatch because I have been disappointed so many times in the past.  I just keep telling my dad that I don’t want to go to only be let down because I won’t e able to have it done in the end.  There is nothing worse than being ‘teased.’  It is like having your favorite piece of candy being swung right in front of your eyes and you can’t have it.

I am also supposed to be leaving Memorial Day, May 27th for Minnesota.  I am really hoping that they will be able to help me.  I am going there for my GI system.  Hopefully they will be able to do something because they are the top hospital in the United States and they are supposed to be the hospital that sees all the rare diseases and diseases that can’t be helped elsewhere.  Besides seeing the top GI docs and hoping that they have something up their sleeves to help me, I am hoping that perhaps I can participate in their study that they are doing there with hemin cells because they are showing that it has been successful in treating my paralysis of the GI system.

However, the Mayo Clinic said that they wanted me off my meds for 2 weeks prior to coming.  I am on so much medication and I am so sick that if I came off of them, I would surely die.  When I spoke to my docs in California, they said that I should still go even though I am not coming off the meds.  They said that the docs at the Mayo will still see me even though I am still on the meds.  I am really hoping that they are right because I don’t want to make that big trip out there for no reason.

I am also scheduled to go back to California in June for another surgery.  They have to buy me time because I am not going to last.  They are going to put tubes in me again and try to get my body to ‘accept’ them even though it didn’t work before.  So I am really having a busy agenda coming up.  I just need the funds so that all this can happen.

The bones protruding out of my  mouth are also getting worse.  My doctor is going to the hospital tomorrow and therefore, he is going to talk with all the head doctors there tomorrow and see if there is anything that can be done because I am suffering so much.  No matter what we try to do to stop the pain such as lidocaine or numbing stuff, it just doesn’t lessen it.  The pain is just horrible.  It makes eating and drinking so much worse.  I barely can eat or drink as it was without the osteonecrosis.  Not it is even worse. Ideally I really need to have a graft put on.  But the problem is that there is really no place to take the graft from because I am so tiny and even if I had the graft performed, we don’t know how well I would heal with everything that is going on because it is in such a bad place as well.

I also have another problem because I am due for another infusion coming up for my bones.  I need this infusion because I am a life-threatening fracture waiting to happen.  The doctors are always afraid that something is going to happen to me because my bones are so brittle.  This is also due to my wonderful disease.  Talk about a disease that doesn’t stop giving, right?  Anyway, even though it should be a no brainer to get the infusion because I desperately need it, I don’t know if I should because it only will kill the bones in my mouth more; it will make the bones protrude even more and die.  So I don’t know what to do.  It is like I am in a no-win situation.  So I really have to think what I am doing.

Well… I guess that appears to be everything right now.  Nothing else is going on.  I am reading an amazing James Patterson book right now.  I started to think he was getting ‘old’ and boring because his books lately were getting to be really bad, but this book that he just released last week is simply amazing.  Its called “12th of Never.” I strongly recommend it.

ImageWe had a pool in our backyard for ages.  We built it for me when my brother was born so that it would give me something to do because my brother was an infant and my mom couldn’t really take me to the beach or pool because of him.  But we haven’t used it for like 2-3 years and instead of still keeping it up, we finally decided to take it down. It was about time because the amount of times we used it towards the end was only like once or twice anyway.  To think… my dad would ‘baby’ that pool and take care of it all throughout the summer (open it in the beginning of the summer and winterize it at the end of the summer) for just that one or two times.  We used to refuse to go into it because it was way too cold.  Despite my brother and I pleading for a heater… we never got one and therefore, we stopped using the pool.  But my dad never wanted to take down the pool.  I am not sure if it was because he was hoping that we would use it again or he just didn’t want to do all the work.  But it was supposed to be my brother’s project since he wanted it down so badly.  Yet, it turned out to be my dad’s project because even though he started it, he gave up and gave it to my dad to finish.  My dad was stuck doing it as my brother watched while playing on his phone.  I knew that was going to happen.  I knew that my dad who didn’t want to do it would be the one stuck in the end doing it.

So now we have a huge pit of dirt in our backyard because that is where the pool was.  I have a turtle named George and he loves going outside.  He is more like a dog than anything else.  He isn’t your typical turtle that just stays in his shell.  Instead, he loves to watch TV, chase the other animals (dog and cat), go out, take baths in the bathtub, etc.  In fact, when you come into the room, he will literally start banging on the cage to come out.  Then when he is mad, he will literally have a hissy fit and throw around his dish and spits.

601147_10100507546634460_450588671_nGeorge is too much.  Everyone loves George (including the other animals).  The best part of him is that he is totally clean (we had him tested) and he is one-of-a-kind.  I have had him for so long.  He is definitely unique.  He is an escapee from China.  When I got him there was a embargo act and there wasn’t supposed to be any shipments of turtles or anything from China.  Well… I always wanted a turtle and after waiting so long, the aquarium called me and told me that they smuggled one in and asked if I wanted it.  I went down to see it and it was love at first sight.

He is such a funny turtle.  No one can believe he is a turtle because he acts more like a ‘dog’ than anything else.  He isn’t afraid of anything and loves to eat bugs, worms, etc.  He is also spoiled.  He has to have premium food and he doesn’t even like to bend to eat.  The pile of food has to be high enough so he doesn’t have to bend down.  He is too much.  I already gave strict orders to my parents that if something happened to me, they better take good care of George.

I don’t think I have anything to worry about because my father loves him way too much too.  Every Sunday morning when my dad sits on my bed and watches a movie with me, he always takes George out and lets him walk around.  He also loves to bother George with his toes by rubbing his toes on his shell, which drives George absolutely crazy.  As a result, George always goes after his toes and his toes only and my dad has to wear shoes when he’s out because he tries to nip them.  George is so smart because he knows exactly whose toes belong to whom because he won’t touch anyone else’s toes except my dads.  We don’t have to really watch him because he is ‘toilet trained’ and he knows not to go out of the room and not to go down the stairs.  He is really smart.

ImageI have the weirdest pets.  Even my cat Missy is too much.  She won’t leave my side.  She likes to baby-sit George too.  So since I don’t sleep at night and watch TV throughout the night, all three of us end up spending the night together watching TV.  Missy also loves to see what I am doing on the computer so whenever I am on the computer, she is right beside me watching.

I just love my animals so much and that is why when I go away and when I am in the hospital it is so much harder.  I miss my animals… my cat, dog and turtle way too much.

Well… gonna get going because not feeling well and I wrote a lot already.  I’ll keep you posted on what is happening.  If you can, please spread the word about how much I need donations.  I really have a lot coming up and it is contingent on funds.  Without the funds, I won’t be able to go for it.  I am rapidly deteriorating and like the doctors have already told me… I probably won’t make it through the summer unless I get some kind of ‘help.’

Thanks again for everything.  Any help that you can give me would be much appreciated.

– Fallon

Leave a comment »