Please help SAVE MY LIFE!

July 24, 2013

on July 24, 2013


The countdown is on and I am waiting to leave for Hopkins.  There is so much doing lately I feel like my head is spinning.  I have so much to say and I really haven’t been doing well.  If all this that you re reading doesn’t make sense… please bare with me because like I said… I am really not doing well, but I wanted to let you know all that is happening.

So… have so much going on. There is so much to do before we leave and my health is continuing to take a downfall.  I getting sicker and sicker.  Dad is working harder than ever in order to try to fit in all the work that he can since he won’t be able to work when we are at HOPKINS. It is literally impossible to fit everything in before we leave for HOPKINS because there doesn’t feel like there is enough time in the day for work, appointments, etc.

My bloods are really deteriorating and I don’t know what they are going to do because it is going to play a part in the surgeries.  I just got back my latest bloods from the doctor today and unfortunately they aren’t good.  I had a feeling that they were worse than usual because I have felt that they went ‘down.’ I have been ‘cramping’ more than usual and having more spasms more than usual and that could be because of my deterioration in bloods.  With everything else that has been happening such as the increase in the mucous that I am producing I as well as the blood that I keep passing every time I go to the bathroom too, it would really make sense that there was a decline in my blood values, which is something I definitely could not afford because they were so low already.  I already have bloods so low and out of whack that I am at risk of suffering from an arrhythmia or cardiac arrest at any moment.  The lower that they go… the more at risk I will be.  There is only so low you can go though before it can happen and I already was bordering the “3” level.

Well… I went to the doctor today and my bloods dropped.  It wasn’t really a surprise though.  I am seriously waiting for my heart to just give out with everything that is happening between all the stress that I am under, the autonomic dysfunction, the medication that I am taking, risk of the arrhythmia, the low bloods, etc.  It is only a matter of time… I can just feel it.  But… I am still holding on in the meantime.  I also found out though that not only did my bloods drop so that I will be more prone for cardiac arrest and such, but they became more irregular in the ‘clotting’ area.  I have been having abnormal values for clotting and therefore, it has shown difficulty in clotting if I was bleeding or something. However, with this new set of bloods that was taking, the clotting factor was really irregular.

I am really nervous because when I go to HOPKINS, I will be undergoing many surgeries/procedures that will be taking a HUGE toll on my body… especially my heart. With my bloods dropping the way that they are, I don’t know how my heart is going to be able to handle it.  In addition, there is one procedure where they are going to be giving me so many potent medications that my heart is literally going to “stop” and need the paddles to restart it.  I am really worried as it is about having the paddles “restart” it because even though I will technically be unconscious and such, but I am scared that it will be incredibly painful and will not work also.  I am scared that once my heart stops, it will never resume… especially now because my bloods are so bad.  I am sure having this blood dropping is not going to help the surgeries/procedures especially the restarting of my heart.  I am also really nervous because like I said my clotting factor is off.  With having a more difficult time clotting, I am so scared that I won’t really be able to clot when I undergo the surgery/procedure.  I am already in really bad shape and can’t easily recover because I don’t have the reserves to recover.  This is really going to complicate things.

I am sure that everything is going to work out and I am sure that the doctors are going to do something at HOPKINS to work with all this that is going on.  But knowing all that is occurring, I am really scared.  I guess it is only normal though because who wouldn’t be scared?  I have been going through so much and it just continues to worsen.  I just keep wondering if there is ever going to be a light at the end of the tunnel.

I have been trying to take the medications to raise my bloods more than ever, but it is really hard to withstand and it feels the more that I try to do, the harder I am falling.  I can’t really get down all my meds and they have made ice pops with my heart meds in them.  So I have been increasing the pops to try to bring up my bloods.  I even have pops all throughout the night in order to keep up my blood values, but apparently it isn’t working.  But… can you imagine if I didn’t have these pops?  My values would definitely be much lower.

I am getting so bad that I can’t believe what my life has turned into.  I used to be such a “happy” person who didn’t let my illness get the best of me.  I used to be the first one not to show that I had an illness.  In fact, people would never know that I even had an illness because I would never show it.  Yes I was really thin and had crutches because I couldn’t walk, but that was about it… I wouldn’t let the disease get to me, as I would go out as much as possible and always look the best that I could.  I always believed that if you ‘looked great’ that you ‘felt great’.  So… I always made it my business to make myself look as good as ever so that no one would know how horribly I was suffering and the misery that I was going through.  People just thought I was just really thin with a bad foot because they would always see me around with a great big smile.

However, it has gotten to the point where I can’t conceal that I have an illness anymore.  No matter how hard I try to ‘cover’ it up and still to look the best that I can, I just have ‘illness’ written all over me because I look so very sick.  I have deteriorated so much and therefore, despite all the makeup to try to cover up the illness and all the smiling… it just can’t do it anymore.  I am just suffering way too much and the pain is just way too much to bare.  It has worn me down and it has gotten so horrible that people can easily see how badly I am doing even though I really don’t want people to feel ‘sorry’ for me.

With my disease, it is a constant battle and I have to be ready for the fight! I am continuing to fight this awful disease even though it is extremely difficult. I won’t let it win! I’m an extremely stubborn and strong willed person and it takes a lot to knock me down!  In addition, if I do get knocked down, I get back up! It’s just who I am. It’s not an easy battle at all and I get quite frustrated and upset at times. The pain is unbearable and I hate it… I truly hate it! I hate what is happening to me.  Yet, I continue to fight.  I always say, “When life gets you down, you know what you gotta do? Just keep swimming and swimming!”  So that is what I am doing!

I suffer all the time (24/7) from nonstop searing pain that is burning, aching, throbbing, etc.  I constantly feel like I am on fire and being doused with gasoline.  The weather changed and keeps changing so I’m all screwed up. It is hotter than ever, and I am sure that isn’t helping my illness.  On a scale of 1-10…my pain level has been pretty much a constant 10 +++ for days now. Everything hurts! I am soooo tired and feeling run down and out of it. The pain is getting to me. I can’t move at times because it just hurts so bad.

I have been deteriorating so much that I literally can’t get off the couch.  Whereas I used to be my best in the beginning of the day and get worse throughout the day and have my nights at the worst, the beginning of the day is even starting off with me being in a horrendous condition.  If I ever wanted to do anything, I would have had to do it in the morning because by noon I was too weak, sick, and in pain to even move.  However, it is at the point now where I can’t even get up out of bed in the morning.  I am just getting so very sick in general.  In addition, since my disease makes me so hypersensitive to everything… even touch… I am having extreme difficulty with even tolerating clothing.  I think partially the reason that I am having this heightened sensitivity to clothing and such is because of the weather because I am so very ‘hot’ and can’t cool down.   I can’t sweat or anything due to my autonomic dysfunction and therefore, I keep blistering and overheating because my disease and autonomic dysfunction keeps being triggered off.

I can basically not tolerate anything due to the extreme allodynia that I am suffering from.  I can’t tolerate even being touched by the most simplest innocuous touch like a touch from my family such as a loving hug.  I have basically been having to walk around my house without clothing (especially pants) because I cannot tolerate any touch on my body.  I usually can’t tolerate a sock or a shoe on my left leg.  However, it has now gotten to the point that I literally have to walk around my house basically naked because of the pain.  It isn’t even the answer to the problem because even walking around with the my skin exposed is painful.  I am damned if I do and damned if I don’t because it hurts so much to have even my skin exposed.  That is why no matter what I have to wear something with sleeves on my arms.  I can’t have the “wind” hit me because anything that hits my skin will literally send me up the walls.  I am like in a whirlwind and in a constant battle because I can never feel comfortable.  I like need air conditioning, but I can’t have it being blown on me.  Everything is just so complicating.

In addition, my nails have been getting worse too.  My nails have become really brittle and falling off.  Everything is just going downhill.

There used to be a time that even though I was suffering with this illness, I would suffer throughout the day, but it was only the nights where I would lay awake literally screaming for mercy.  However, it has gotten to the point where I am screaming nowadays all throughout the day.  I can’t believe how bad the pain and suffering has gotten.  I never once thought it was possible to even get this bad.  Dad keeps saying that he wishes that he could ‘take away the pain.’  I know that he would if he could, but I also know that he would give it back in a second because he wouldn’t be able to handle it at all.  It is something no one can imagine.

I am really worried actually about going to John Hopkins.  I will be leaving shortly.  I am scheduled to be leaving August 4th, but if the call comes in sooner than that… I will be leaving earlier.  We are awaiting for a bed to open up in the ICU and for everything to be scheduled because there is so much to do and I can’t just go into the hospital in a regular bed.  It really makes it harder to get a bed there because it is the #1 hospital in the nation and a “Level 1” trauma center too.  But the doctors said that the latest I will have to wait is until August 4th.  So we are all scheduled for that day to leave, as long as the call doesn’t come in sooner.

I am really excited to be going to Hopkins because I am really suffering, but I am really really nervous.  I really don’t know what to expect and I am really scared that something is going to happen there.  After all, I am going for really scary, radical, and life threatening surgeries/procedures and to make things even more complicated, I am not in the best of conditions withstand anything. Even just being in the hospital is jeopardizing my life because I don’t have an immune system really and any little I can’t fight off anything.  Infections loom in hospitals and anything “minor” is something “major” to me.  The littlest cold or sniffle is like a life threatening full blown flu to me and I also don’t have the reserves to recover from anything should I get sick.  So we really have a lot we are going up against when I go to the hospital.

Like I said though in past writings, we have so much stuff planned.  We have it planned to get the obstruction/twist in my colon out, which I am hoping won’t end up in an ileostomy. They have been talking about having this ileostomy, but I am so against it.  I really don’t want a bag.  I told them that I am going to write all over my body “NO BAG” and if I find out that there is a bag, the heads of doctors are going to roll.  You are going to turn on the news and hear all about a neurotic patient going crazy at Hopkins.  When I told my dad how I don’t want a bag and such, my dad says, “Whatever has to be done is going to be done.”  My dad doesn’t want anything to happen to me and he will do anything and everything to keep me alive.   I know where my dad is coming from because if it really needs to be done, it should be done, but I really don’t want a bag.

In addition, I am also going to be having surgery to put tubes in me.  One tube that will be put in me will go through my entire GI system and go into my lower intestines.  They want to try to feed me in order to try to ‘nourish’, make me stronger, and ‘buy’ time.  Therefore, they are hoping that if they go low enough into the intestines, then perhaps they will be able to find a viable piece that they can use.

They are also planning on putting a tube in to ‘vent’ me.  Due to the extreme paralysis of my GI tract, I can’t move gas through.  I walk around at times like I am 9 months pregnant and ready to give birth.  In this way, I will be able to open up the tube and it will ‘vent’ me.  It will give a way to allow the gas to escape because not only am I in severe discomfort with this gas buildup, but it is doing a lot of damage to me as well.  It is also contributing to shutting down my organs as it is putting a lot of pressure on my organs including my heart.

Another surgery they are going to be doing is removing all the stool that is in me.  I have pounds and pounds of stool because of this.  Since my GI tract doesn’t move, I am literally ‘rotting’ inside (sorry to be so disgusting).  Therefore, they are doing surgery to remove the stool as well.  I have tried every type of laxative, enema, etc. but nothing works…. from enema bags, miralax, etc.  The only thing left is surgery!  Therefore, even though they know that the weight I am is not ‘true’ weight because I am all filled up with this stool, I am really nervous because I know once I get all this removed, I will most likely weigh my true weight, which is in the 50s.  Stool takes up so much weight and that is why people who have eating disorders and such take laxatives and when they end up purging the stool out… they lose weight.  However, even though I know I technically know that this weight that I am is really inflated because of the stool, it really is going to be a big shockaroo to see the actual true number in the 50s.  You know?  Doctors never thought I would lie this long because of my BMI.  They said that it is like unheard for someone in my state to even be living.  But I told them that I am defying medical odds.

If that isn’t enough, they are also going to be doing a surgery where they are going to be giving me very potent medications that will end up stopping my heart.  They will of course need the paddles to restart it.  They are hoping that with these medications, it will help to ‘reset’ my GI tract and even though it won’t ‘cure’ me, the hope is to help reverse some of the damage that has been done.

Finally, with all that has been happening, they are planning on giving me ketamine around the clock and putting me into a in-and-out comalike state. Thank goodness because I am going to need it with all this that is happening.  They also want to give me ketamine because my disease spreads like a wildflower and anything that is considered ‘traumatic’ can potentially spread my disease such as the IV, surgery, stress, etc. So… they are hoping that since I will have all these things that put me at risk to spread my illness, they are hoping the ketamine will keep it under control.

I am really scared.  I never have been more scared in my life.  I told my dad that I never have been more scared in my life and it is so important more than ever to have the support of anyone that I can.  I need prayers more now than ever because of everything that is happening.  I am so scared of all that is going to happen and I am so scared about coming home NOT human. I really don’t want to come home all on bags and tubes.

One of my biggest fears is not to feel human.  This disease has really robbed me of a lot and I really don’t want it to rob me of my dignity as well.  It has robbed me of friends, family, walking, eating, social life, etc.  Everything that people take for granted has been taken away from me.  I don’t want to think of just ‘existing’ in the world and having tubes to put stuff into me and bags to take stuff out of me.  Even though living like I am right now is not really living to me, living with bags and tubes isn’t making my life better.  I mean… I think I might be able to handle one of them, but definitely NOT both.

I do know that if I get the tubes, I will never be eating again.  That really bothers me because what kind of social life will I have then because so much of American social life revolves around food.  People are always eating and people go out with others to restaurants and talk over food and drinks.  Who is going to want to go out with me when all I can do is ‘watch’ them eat?  Most people are not going to want me to just sit there watching them because they will feel uncomfortable.  In addition, I will always feel hungry.  Even though I will technically be ‘full’ because I am being fed through the tubes, I will always be hungry because it is bypassing my mouth, not being chewed, and not going into my stomach.  Therefore, it won’t register in my brain as ‘eating.’  So… my stomach will constantly have the hunger pains of not eating even though technically I will be full.

I can’t believe that this is all just really to ‘buy’ time because without all this stuff, I will not make it much longer.  The doctors say that I am really deteriorating really rapidly and getting too sick to really go on like this.  In fact, I was just at the endocrinologist the other day and he said that he would “never have expected me to live this long.”  But I told him I am defying medical odds.

Something really needs to be done and done quickly because I am running out of time. In reality, I really need the multivisceral transplant (stomach, small and large intestine, liver and pancreas). However, it is very radical and very dangerous.  Only 6 hospitals in the country really do it and they are really scared I won’t survive it.  They think in terms of my GI problems that it will be my only answer, but they don’t think I will survive it right now.  That is why they are also trying to do all these things at HOPKINS this time… They are trying to ‘buy’ time because my organs are shutting down, I am rapidly deteriorating, I am weighing less and less (I only weigh like in the 60s now), etc.

Since I am so afraid of getting the tubes and I won’t be able to eat anymore, I am trying to enjoy whatever time I have now eating.  Even though I have difficulty eating now and basically can only have really soft stuff like egg whites, ices, and ice-cream… I am still trying to get down the “good stuff” so that I can’t say that I lost out on having the good stuff or I missed out on it either because once I get the tubes, I won’t be able to ever have it again. I have been trying to eat anything and everything that I can such as McDonald French fries because I don’t want to say, “I should have had.”  If I have to get the tubes or even the bag, I just hope I will be able to get the transplant right afterwards as soon as possible so that I can get my life back and I can get back to eating.

I have really been suffering lately and I honestly don’t know how much longer I can hold on.  I really am scared for all that is going to happen at Hopkins, but I am even more scared to living like this.  Therefore, something definitely has to be done because I can’t exist like this anymore.  I am literally watching myself deteriorate and die, and I am suffering in agony.  I can’t take the pain because it is not just physical pain, but it is emotional and pain because I am watching my whole life get taken away from me and everything that I had and was able to do is being taken from me.  I even feel like I am losing my brainpower.  I used to be so very smart and had photographic memory.  Now I can’t even say that.  It is just not a life to live.

I already told my dad that when we go to HOPKINS that I am thinking about signing a “Do Not Resuscitate” order.  I wanted to do it the last time I went for surgery, but just when I was about to do it, I couldn’t do it because I looked at my dad and I knew that he didn’t want me to do it and how it hurt him so.  So… I ended up not doing it.  However, it is at the point now where I just can’t do this anymore.  I am tired of suffering.  It isn’t fair to me or to my family anymore.  I have even pleaded with my dad to take me to Oregon or to Jersey for “Physician-Assisted Suicide” because I really can’t take it anymore.  Only four states in the country do it.  It is so peaceful and at least I won’t have to suffer anymore.  After all, people put their animals to “sleep” so that they don’t have to suffer anymore.  Why can’t I have the same opportunity?  The pain is just out-of-control.  I don’t want to die… believe me! But something has to be done.  I would do anything to live.  But if I can’t receive the treatments that I need and if I am suffering so much and nothing is working, I need something to “help.”  I don’t want to die, but I know that I just can’t live like this!

When I go to Hopkins, I will be there for quite some time.  I am really nervous because not only do I not know what to expect and scared for something happening, but I am also going to be missing my mom’s 60th birthday.  I really didn’t want to miss her birthday because it is such a special birthday.  After all, it is the big 60th.  I feel really bad that I won’t be here with her to celebrate her special day.  I also really wanted to do something for her to make her birthday really special. However, due to my current situation and lack of funds, it really is impossible.  My mom keeps telling me how she doesn’t need or want anything, but I still want to do something special for her.  After all… she is my mom and she means the world to me.  She has given up so much for me and has given me so much in life.  I owe her more than I can ever give her.  I just want to make her day special and show her how much she means to me and appreciate her.  If you have any ideas what I can get her, let me know.

I recently had an appointment with the endocrinologist and was told that I can’t receive the bone infusions anymore.  Even though my bones are extremely brittle because of my illness and I am literally at risk for a life-threatening fracture, the doctor refuses to do the infusions anymore that can potentially help me.  I have been going for bone infusions that were supposed to be building bone.  I have been undergoing them for about 4 years and even though it was only the first year that I really had “good” results, the doctor claimed that without the infusion, my bones would have been a lot worse.  My bones have been really getting worse each year, but without the infusion, which was supposed to build bone, I am sure that it would be even more horrendous.  In fact, my bones are so bad that the doctor even told me not to let anyone ‘touch’ me. When I see him, the first thing he always says is “Did you break any bones lately?”

Even though the surgeon who deals with the Osteonecrosis says that I really need to have the bone infusion because my bones are so bad, the actual doctor who prescribes and does and the infusion is refusing to do. It is really a shame though because I really need this infusion because this is the most powerful medication that can ‘build’ bone. The doctor is putting me on other medications to try to help, but they are nowhere in comparison to the infusion.
Photo Jan 30, 2 22 05 PM (1)I don’t even know how I am going to tolerate the medication that he is putting me on because he has placed me on it in the past two other times and both times we had to stop it because of reactions.  It will be another injection to add to the mix of all the other drugs and injections I already take.  I am glad it won’t be another pill because I already take like over 50 pills and can’t swallow anymore, but I am like a human pincushion already because I already give myself injections for other stuff.  In addition, it is best to ‘rotate’ the sites but since I don’t really have meat on me, I can’t do that.  Therefore, I only have one place to put all the injections, which is in my abdomen.  So everyday it is in the same spot.  It really gets painful.

Guess what though?  It is a real shame that I can’t get the infusion anymore because for the first time since the very first infusion, I actually had an increase in the amount of bone that I built.  I had a bone study and even though I lost a lot of bone still in my arms, I actually built back 11% of bone in my hip and spine.  That is a lot of bone.  But unfortunately, I will most likely lost it right away now especially since I am not having the infusions anymore.

Speaking of the surgeon for the osteonecrosis, I have an appointment with him on Thursday (next week).  I have some more dead bone protruding so I wonder what he is going to do.  I wonder if he is going to remove it at that time. I will let you know.

In addition, I am having another ketamine coma/infusion on Friday.  Hopefully we won’t have any bad complications.  Even though the amount I get during these in New York is nowhere near the amount that I really need to make a difference in my illness, it is still something I go for and look forward to.  It is the only time I actually get a ‘vacation’ from my illness.  Ketamine is known as an NMDA receptor and theoretically it is thought that in a high enough dose it can potentially reverse my illness.  However, since the dose in New York is nowhere high enough, we are still hoping that it is helpful.  It is definitely helpful in giving me the benefit of giving me that little vacation from my illness.  But we are hoping that these ketamine infusions/coma will also be stopping or slowing the progression of my illness.  My illness spreads like a wildflower and even though the amount I am getting definitely won’t reverse it, we are hoping that at least it is slowing it down.

Ketamine is like my miracle drug.  When I go for the ketamine coma, it is the only time where I can rest.  I suffer all the time from nonstop searing pain.  I never sleep except for that brief period of time (up to 30 minutes) after I take my meds because they knock me out, so when I go for these ketamine infusions/comas, it is the only time I can escape this suffering.  I actually get a full day of suffering free because I am given this infusion and in this coma like state for the entire day.  Unfortunately it is only short-lived and after it is stopped the pain and all the suffering comes back, but at least I get a brief time of suffering free.  It is moments like that time that I cherish.

I love my ketamine and I am so fortunate that I have now been able to take it at home.  I recently have been given it at home and it has been extremely helpful.  Now I know exactly why people turn to drugs and why they call this drug “Special” K on the street.  Only though this drug only lasts a really short time like 45 minutes, it is like the best 45 minutes of the day.  It makes me so numb and in such a daze that even though I am in so much pain and agony… it kinda numbs me and such that I don’t even care.  It is also the only time that it knocks me out and I can get some sleep.  I don’t know what I would do without it.  Unfortunately though, it is not covered by the insurance and is extremely expensive. I also can’t get it at an ordinary pharmacy and very few places carry it.  I actually have to have it ‘compounded’ at a special pharmacy in order to have it made.

1044884_10100841311966060_661690592_nI have the most amazing dad.  Dad spends the nights awake with me while I take the ketamine because ketamine is a drug that you ‘hallucinate’ with.  It can get a little bit scary when you take it because you get a ‘weird’ feeling and you suffer from things that aren’t true. You get into such a euphoric state at times also that you end up laughing like a hyena too. I will constantly call for my dad when I have the ketamine without me knowing.  The doctors say that my dad plays an important role because when I am under ketamine because I really only respond to someone that is ‘familiar’ to me.  The doctor says that he is the one that makes me feel ‘comfortable’ while I undergo it.  My dad is not only my dad, but my best friend and knight and shining armor.  He is my superman!  There is nothing that he wouldn’t do for me.  I love him to death.  I am so fortunate for all the things that he does for me. He works himself ragged just so he can try to get me as much treatments as he can (even though I need more treatments than that).  My dad is so fearful of ‘failing’ me, but I told him that he can never do that.  He has been my hero from day 1 and always will be.  I would never ever blame him for anything!  Nothing will ever be his fault. If it wasn’t for him, I definitely wouldn’t be here today!

1012409_10100838059978070_975447790_nMy dad is so special to me.  When I can’t walk, I know that I can depend on him to carry me like Superman.  When I am upset, I know that I can depend on him to make the sun come out and make me laugh. He is the one who always jokes around and plays around with me no matter.  There is never a dull moment when dad is around and he’s so unpredictable.  He loves taking pictures, so one time when we were in the car, he had his hard hat in because he needs it when he goes to construction sites.  So you know what he did?  He put it on me and snapped a pic.

It just stinks that everything that I need that can potentially help me costs money.  I keep wondering what this world would be like if that very green dollar didn’t exist.  It is so unfair that my life is deteriorating and I am dying and yet, I can’t receive the necessary treatment that I need because I can’t afford it.  That is why I have been trying so much to raise money.  Everything just is so expensive and without it… I will surely die.

With my health deteriorating the way it is, I am so scared that I won’t get to fulfill all the stuff that I have on my bucket list.  I want to do so many things before I die.  There are so many things that I was robbed of and that I never got a chance to do. I only wish at times that I was under 18 because then I would be able to do “Make-A-Wish” Foundation and get one of my wishes granted.  However, since I am not… I guess it means that I am left to just “wish.”  I have so many dreams and wishes, but I know in reality… that is all that they will remain… dreams and wishes.  I would love to go to Atlantis and England on vacation (not only would I love to go on a family vacation because my family and I haven’t been on a vacation in like 10 years and we could use some FUN time together, but I would love to see all the castles in England and enjoy swimming with the dolphins and the warm weather in Atlantis), meeting various actors such as the Kardashians, Ellen DeGeneres, Kelly Ripa, etc.  One of my ultimate wishes though is to actually meet Prince William and Princess Kate, but of course I know that is definitely never going to happen.  However, I must say that I did predict the day and time that the baby was going to be born.  I should have betted.

However, there is one dream that I have that every girl always has, which is dressing up like a princess in a wedding gown and getting married.  I know that probably will never happen because I probably won’t live to see the day that I get married.  Plus… with all that is happening to me, I don’t honestly know what guy is going to want someone like me anyway.  But one of my biggest dreams has always been to feel like a “princess” and get married.

I ALWAYS had the dream of getting married and having that father daughter dance. However, I know deep down that in reality that this day probably will NEVER happen. I won’t live long enough to see this and I am not going to b able to even ‘walk’ much longer as I’m struggling nowadays to even just make it on crutches now but won’t give in because I don’t want to be in a wheelchair. Anyway… I was thinking of getting a beautiful gown (I was hoping I could rent it out it something because we know that it can be so very expensive) and I wanted dad to rent out a tux. Then I was thinking about having a ‘father daughter dance’ like in a park or something.  I figured we can bring a boom box or something and dance in one of the places where u can get ‘married’ in a park. It’s stupid … Right? I figured this way I’ll get my dream and dad will always have these memories to hold into also. I would love for an audience and for people to watch and see like a real father daughter dance when people watch… But I doubt anyone would want to come. I doubt anyone is going to even rent out a wedding dress for the day and I bet it would also be expensive. This just all ‘talk’ anyway. I know in reality that it’s never going to happen. But it would be nice to have this as a memory just in case I don’t live long enough and just in case I am in that wheelchair, which is a real possibility.

I also want to let you know that I also am trying to post YouTube videos.  I have my blogging here on my website, but I was thinking about also having YOUTUBE videos as well because sometimes watching movies is more interesting and fun than reading all this long and boring stuff.  I have been working on the computer and learning how to make movies, so I thought it might be a good idea.  Not only would it be easier for you to see and learn all that is happening with me, but it would be fun for me to make and sometimes it is easier to just ‘talk’ than to write.  This way also you can actually ‘see’ what is going on.

I really want to make my mark on the world before I leave.  Therefore, I figured that through my videos, I might be able to accomplish that.  I thought that I cannot only bring awareness to my illness and have others learn all about it since it really is unheard of, but I figured also on the clips that I can talk about various things such as books, show you cool things I do with my animals, etc. If you have any suggestions of things I can do, please let me know.  I am always open to suggestions.  The videos aren’t so good right now, but they are just starting and I am learning.  I guess the saying goes “practice makes perfect!” So we will see what happens with that.

546849_10100841312345300_1722097579_nMy dad recently showed me a bird’s nest right outside our window.  It is the cutest thing in the world.  There is a momma bird that keeps coming back and forth to feed her babies.  I told my dad that no one better touch it!

Well… I am going to get going.  I am really not feeling well, but I just wanted to write and let you know what is happening.  Thanks again for all your support and encouragement.  I can’t tell you how much all this means to me.

Here is the site to my latest BLOG YouTube video: http://youtu.be/pax5IptO_l8

– Fallon


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