Just wanted to say HI and Missy wants to say HI too. She is actually right by my side as I write this because she never leaves it anymore especially at night. In fact, Missy loves the computer and seeing what I am doing on it. Not only does she lay right next to me and watch exactly what I am doing on it, but she will literally get up and walk right on the computer and keyboard, as well as lay across the keyboard too so that I can’t write either. I guess she wants the attention too and therefore, she figures that if I am not giving her the attention that she wants… the only way she can get the attention definitely is by laying all over the keys. I mean… what other choice does she have but to have the attention when she does that because I can’t type or do anything else. You know?
Missy is my best friend. You really learn who your true friends are when you are sick, and unfortunately all my friends have really walked out of my life when I got sick. I really don’t have anyone that has remained by my side throughout this besides my parents. So… to have Missy by my side, it really means a lot to me. If I didn’t have her, I really don’t know what I would do. She is the only one I can really ‘count’ on because when the tough gets going… at least she doesn’t run. In fact, the sicker I get, the more she actually sticks around. My parents always say how she is my ‘babysitter’ and they can always tell when I am doing worse than usual because Missy alerts them to it because she never leaves my side or there have been times where I have been really suffering and she has even gone and gotten them. It really is something that a cat like her can notify my parents that something is wrong and that they need to come to me. You know? She is definitely one of a kind!
Missy is just simply the best. I don’t really get to do a lot or get out, so I spend a lot of time inside and with her. In addition, I don’t sleep at all like normal people. This disease has robbed me of that luxury. So… since I have spent countless nights awake, it can really get lonely. Missy has been a great friend in that she spends all the endless nights awake with me. It really can get lonely every day when you are alone… especially at night, so knowing that I have her by my side really is a BIG help. We do so much together like watching TV and even going on the computer. She is such a character.
Missy is one of the huge reasons why I hate going away for treatment. Of course I can’t really get the necessary treatment that I need around my house and therefore since I am so complicated, I am forced to travel across the country. I of course can’t bring Missy and therefore, she remains at home with my mom. Even though I know that my mom will take excellent care of her, I am really nervous about leaving her because I miss her. Not only do I not like to be separated from her, but also I am afraid of leaving her because I am always afraid of coming home and she not being there. She is only 9 years old, which is very young for a cat and thank goodness (knock on wood) she has been very healthy)… but you ever know. If something would happen to her… I don’t know what I would do. Like I said before… she is my BEST friend and the only one besides my parents who has stuck by me. I love my dog… don’t get me wrong, as he is my buddy during the day… but no one can compare to my Missy. She is definitely a character and one-of-a-kind for so many reasons… too many to tell and not bore you about.
How was your 4th of July? My 4th was the usual. I stayed home because I can’t really do anything. I wish I could have went out and saw some fireworks, but my disease prevents me from doing that. I did try to help my dad give my dog a bath though. He really needed it and since I can’t give him a bath on my own, I took advantage of my dad being around so that he could help me. Not only do I need my dad to help me because my dog is too heavy to lift up and put in the bath tub, but I can’t really give him a ‘bath’ because it exacerbates my illness. As you can see in the picture, just getting my hand wet caused my whole disease in my left arm to become exacerbated and discolor. I can’t do anything without causing my disease to worsen. My disease literally is in control of me instead of me in control of it, which is the way it should be.
Well… I am writing to you because I wanted to update you on all that is happening because I don’t know what is in store for me or what is going to happen, and I didn’t want to leave you in the lurch. Everything is touch and go right now…so I figured it would be better ‘safe than sorry’ and write to let you know everything that is happening just in case something happened. This way you are kept abreast of all that is happening because anything can happen at this point. I am just getting really bad.
First off… they have started me on ketamine at home as of last night. I must say… I don’t know why they waited so long to give me this! What a difference this has made. I mean… It really has been a great help, but I only wish it would last longer. If I sound a little ‘whacky’ in this blog, now you know why… they have me on ketamine. But, hopefully it won’t mess too much with my thinking.
This ketamine has really been a great help. The only thing is that it lasts such a short time… like only an hour, if that much. Currently, I am only allowed to take it two times a day, but the pharmacist said that even though I am on 100 mg per dose, he said that I can go up on it because like I said… it is very fast acting and it doesn’t ‘last.’ I wish it would last because it really makes being able to tolerate and live with things so much easier. It still is unbearable… don’t get me wrong… but at least it is a bit easier. I just wish that it would last longer instead of just the side effects lasting so long. I get such a bad stomachache, headache, etc. from the ketamine but the actual ‘good’ effects of the ketamine only last for less than an hour. But at least that hour is heaven. It lets me rest up a bit too.
I can’t believe how long and what it took to finally find the ketamine. No wonder my doctor said to me “good luck finding it.” No pharmacy carried it. I tried all the individual private pharmacies, the chains of pharmacies like RITE-AID and CVS, and even all the Internet pharmacies, but I couldn’t find one that carried it at all. After searching, I finally found a ‘compounding pharmacy’ that carried it because ‘compounding pharmacies’ actually ‘make’ it for you, but the problem was that this pharmacy was out-of-state and apparently they can’t ship ketamine across states. So… I had to continue to search out a place in New York. After some more searching though, I finally found a place. It isn’t exactly around the corner, but it isn’t too far from me.
I really like this pharmacy because the pharmacists are extremely caring and knowledgeable about their products. They are willing to help me out in any way possible. In fact, since they are ‘compounding’ pharmacy and able to make things, they are able and were willing to make my other drugs that I have to go out of the country to get such as my Domperidone. The only problem is of course it is more money because these drugs such as the drugs I get out-of-the country and the ketamine are not covered by health insurance and as a result, I have to pay for it all out-of-pocket. Therefore, they are of course more money than the place I get it overseas. But it is nice to know that in an emergency that I can go have it made there in case I run out or need to get that drug in an emergency.
It is also nice to know that they can make it because they can combine all the pills of one medication into one pill. As I told you in the past that I am having an extremely hard time swallowing pills, and I take over 50 pills. Some medications though are divided up into like 3 pills each time because they only come in certain milligrams (so it takes like 3 10mg pills to add up to the 30mg that I need). Therefore, since the pharmacist knew that I had problems ‘swallowing’ the pills, he said that he would combine all the three pills to make 1 pill so I wouldn’t have to worry about swallowing something three times. Of course that probably would mean though it would be ‘bigger’ too though. But it is something to look into though because it would be extremely helpful in swallowing because I wouldn’t have to swallow as much. But like I said, it would also be more expensive than getting it overseas, so I don’t know if it is an option. Everything comes with a price and unfortunately everything that seems to be able to ‘help’ me and for the better always comes with a price tag and is too expensive for me to be able to get. It stinks how my health is being ruined because of this stupid green paper. I truly wonder at times what it would be like if money didn’t exist in the world.
Well… it is getting closer and closer to Thursday. We are hoping that I will be able to last until then, but who knows what is going to happen. We are supposed to be leaving for Baltimore, Maryland because we are going to John Hopkins Medical Center. I was originally just going to go to speak with them regarding my GI issues and neurological condition because I need a GI team and neurological team available on the East coast in case something should happen because if there is an emergency, it would be easier to get to them than to get across country to California or to Mayo. Since the local hospitals really can’t deal with me because I am so complicated and have even told me that (they said at the most that they would try to stabilize me and then send me off), I have no choice but to go to Hopkins because that is the nearest hospital that is able to handle my complicated situation. I was also going to see them in hopes that perhaps they might be able to help me because I am deteriorating so much and running out of time. My doctor’s mentors are there, so my doctor in California was also hoping that perhaps they might be able to help me too.
However, it appears that I will be having emergency surgery when I go there. It appears in an x-ray that I have a severe obstruction or a colon twist. They aren’t sure which it is, but they know it is definitely something. They want me to have another CT scan or something to definitely say what it is, but I haven’t gone for one because I am too scared. I haven’t gone because ‘no news is good news’ and I know that once I go and find out definitively what it is… it will mean that I will have to attend to the situation immediately. I really am scared to have to deal with this situation because I really don’t want a colostomy. I don’t think I am going to be able to handle this. It is like one of the last things I want.
I really am scared about getting a colostomy. I know people might say it ‘really is no big deal’ but to me it is a MAJOR deal. I really can’t deal with it to be honest with you. Even when my friend’s daughter ended up getting one years ago, I even said to her that I give her a lot of credit because that is something I don’t think I could ever handle. It is like they are taking my normalcy away completely. I don’t feel ‘normal’ at all. I don’t even feel ‘human’ anymore because they want to put tubes in me to ‘feed’ me, tubes in me ‘vent’ me because I can’t get the gas and air out of me because my entire GI system is essentially dead and I build up with all this air and gas that I can’t get out and become really distended, as well as a central line tube because I am getting so bad that they want a way to access my veins easily and in an emergency. When will the tubes just stop? I will have to tubes to put stuff in, tubes to take stuff out, etc. I just don’t know about this.
When I went for the x-ray, it showed this obstruction or colon twist in my mid abdomen. The doctors were always afraid that I would have a twist in my colon because I was getting so much air built up in my abdomen that it was only a matter of time until something like this happened. My abdomen is so filled up with air that when doctors look at x-rays, they can’t believe what they see. They are even so afraid to even operate on me because of all the air that is in me. I have so much air in me that it is putting so much pressure on my organs that it is essentially shutting them down. This ‘air’ is essentially causing my organs to fail and the doctors always told me that it could result in the twist of the colon. They told me that if this ‘twist’ occurred, it would be a real emergency because it would be extremely life threatening. They told me that it would require emergency surgery and immediate attention because my life would literally be on the line.
So now that I have this x-ray showing this observation, the doctors are really worried about what exactly is happening. I did speak to the doctors at Hopkins already even though my appointment isn’t until Friday, and they really wanted me to come to the ER already because of this. They really don’t want me taking the chance of ‘waiting.’ However, like I said before… I am really nervous about having this surgery because I really don’t want a colostomy. So… I am trying to hold out as long as possible. The doctors did tell me not to be a ‘martyr’ because it can easily kill me. They said that if “I should feel any worse, feel anything different, or feel any pain, I need to come to the ER in Baltimore immediately.” All I know is that it is getting worse in the sense I can’t go to the bathroom worse than ever, and when I eat (even the littlest amount) I become much more distended immediately. Doctors also always told me that if you ever stopped passing below everything including gas… that was the time to worry. Well… I guess now is the time to worry because I can’t pass gas anymore really, but I still am trying to hold out as much as possible.
In the meantime, the doctor is making arrangements for my arrival since it will most likely require this immediate emergency surgery. Plus I am not a regular surgical case, as I am extremely complicated and need urgent and special attention. Since I am so complicated and medically unstable, I need more than one anesthesiologist and need a whole special team in the room because if something should happen, I need more than one person able to help. Plus, I need all different specialists in the room during the operation as well because they never know what to expect with me. Any little thing can set something else off… especially since I have that rare neurological disease and autonomic dysfunction. So all bets are off. Not only am I nervous, but also so are they.
In addition, I will require ketamine before the surgery, during the surgery, and after the surgery. Having ketamine around the clock is not an everyday occurrence and therefore, it requires careful planning as well. I need it because it is really the only medicine out there that can potentially help keep the disease at ‘bay’ and stop the spread of it. Any traumatic experience can spread this disease and of course surgery is extremely ‘traumatic’ and therefore can spread it BIG time. It is hoped that through the ketamine around the clock, I will not only be kept comfortable because it will act as a painkiller, but it will also allow the disease not to advance. At this point especially… we can’t afford for this disease to advance because it is extremely horrendous already and it is everywhere. I already am suffering so much already and all the time. I can’t imagine it being any worse nor do I want to. You know?
I was really nervous because originally we were only supposed to go to Maryland for a few days and then we were supposed to come home because later on that week we were supposed to leave for California to have all those other surgeries. I was planning on having all those other tubes put in when we went to California, as they were trying to ‘buy’ time since I was running out and deteriorating so much. They were going to try to put that NJ tube in me to try to find that piece in the intestine low enough that is still ‘viable’ and able to accept food by bypassing the entire GI tract, as well as putting in that ‘vent’ tube and central line. However, now that I will be having that emergency surgery in John Hopkins, I obviously can’t be in 2 places at the same time and therefore, I won’t be able to go to California most likely.
It really complicates things as well by not being able to go to California at that time because my head doctor was supposed to be leaving the hospital right after I was supposed to have my surgeries in California. So now that I am not able to have those surgeries at that time, I don’t know what is going to happen because my head surgeon will not be there any longer after August. My head doctor is still not sure completely where he is going or anything, so I don’t know exactly what I am doing. But, it does look like he is going to be going to Kaiser Permanente, so I guess that would be where I would be heading in mid August if I wanted to remain with my head doc. I mean… I really want to stay with him because he is one amazing physician. I never met such a great doctor. He is extremely knowledgeable, an excellent doctor, and even set up a whole successful program in Africa. Yet, since I am so complicated, I just hope that the other doctors in the other specialist areas can help me because it isn’t Stanford hospital. You know? I never heard of the hospital “Kaiser Permanente” and even though I might have an outstanding head GI doc, it doesn’t mean that I will have excellent care overall because of my other complicated conditions. You know? So… I am just hoping it will all work out in the end. I am also hoping that I will make it that long because I am deteriorating so much that pushing it off is not the ‘smartest’ thing to do. I am really nervous because I am losing weight and such and with surgery… I definitely don’t have the reserves to recover. Especially with having this ‘emergency surgery,’ it is going to take a lot out of me. I just hope that I will be able to make it to see him in mid-august to try to ‘buy’ this time because if I was deteriorating before I have this surgery… I can only imagine what this surgery is going to do.
In addition, I was so afraid that we would have no place to stay now that we were going to have to remain in Baltimore longer. The hotel that we were staying at was completely booked for the days that were originally booked for and I really thought that booking for additional days was going to be an impossible task, especially since it is the summertime and we are staying in the ‘harbor.’ I guess Baltimore is a prime place to be in the summertime… especially the harbor because it was literally impossible to get a hotel. Plus… they were extremely pricey too. Thank goodness though that I got a discount because I am going to the hospital though. But even so… it is still expensive… just not nearly as much as it could’ve been. Thank goodness for the little things.
So as I said, I was extremely scared that I wouldn’t be able to get the additional days that I needed. I mean… I knew they were completely booked for the days we were already staying and I needed to add on at least an additional 1-½ weeks. But, after speaking to the manager, he told me that I could add the additional days. What a relief that was. At least I know that there will be a place for my dad and I to stay… well actually for my dad since I will most likely be in the hospital during that time.
I am really getting nervous about going to the hospital because of the surgery. I have been to Hopkins one other time, but it was with my mom. I already told my dad that since we are arriving on Thursday and my appointments aren’t until the next day… I want to just spend the day walking around the harbor. I never get any FUN in my life and the only thing I have in common with that three-letter word is the first letter. I basically spend my entire life cooped up and isolated in the house because my illness has robbed me of so much including being able to go out. I really can’t do a lot because the weather has to even be ‘perfect’ to even go outside. The slightest difference in the temperature that is tolerable for me can send me in excruciating pain. I can’t go out in rain because the drops that hit me feel like bricks being dropped on me. I can’t go out in wind because it is extremely painful. I even can’t go out in the sun especially when it is a ‘hot’ sun because it burns me. So essentially I need the perfect weather in order to go out and I need to be extremely careful or else I exacerbate my illness and suffer more. This disease is HELL. In fact, the doctors have even stated that if “Hell was a clinical medical condition, it would be known as my disease.”
But like I said… I really want to go to the harbor and just sit around and watch the boats and stuff. It looks really beautiful and something will be really relaxing. I just hope that the weather permits me to do so. I think it will be good for both my dad and me to be able to do that because not only will it ‘relax’ us but it will give us something to do and get our minds clear for our big day that follows.
So… there is so much to do before we leave. In addition, having surgery and staying longer in Maryland also complicates matters in other ways too. I was supposed to see the bone doctor in New York because I need to have my bone infusion, but obviously if I am in Maryland, I obviously can’t have that and will have to be postponed. It literally took me forever to get that appointment and it stinks that I will have to postpone it.
Even though I had the surgery for the osteonecrosis, it is getting worse. Unfortunately, it is spreading and even though they did remove the dead bone, there is still dead bone in my mouth. I felt some relief when they did remove the bone initially, but since it is now spreading, I am back to suffering again big time. I only wonder when I see the surgeon again if he is going to operate again to remove more. I only wonder how much more bone he is going to take out. I honestly can’t wait to see the surgeon because it is hurting me so much. But of course I have to take care of the surgery in Maryland first and it will have to wait until we return. I just hope that the osteonecrosis and dead bone can make it that long and not get too much worse in the meantime. Never a dull moment… you know?
So… that appears all. So much to do and so little time! Whenever you don’t want something to occur, it always comes in no time. I really need to plan on bringing a lot of stuff to do especially if I am going to be in the hospital. Any suggestions? Any suggestions on a good book? Any good movies to watch?
I am also hoping that my slippers that my mom ordered me arrive in time. I needed slippers for the hospital because I can’t wear those hospital socks they give you and I don’t want to walk barefooted on the floor. Even though I can only wear a shoe on one foot, I really don’t want to walk barefooted! So my mom ended up buying me new slippers, but given the short notice, I am just hoping that they arrive in time and they also fit. After all, we only have 3 days really to play around with. I have the best mom in the world because even though she won’t be able to be there with me, she always makes sure that I am well taken care of. She always makes sure that I have everything that I need. It really stinks that my whole family can’t be with me when I go for treatment especially when it is surgery like this. But someone has to stay back and watch the house, pets, and business. Plus… we can’t afford to all go either. So my mom always stays back and ‘holds down the fort.’ It isn’t easy because I would really like for my mom to be there with me too. But I always speak to her all the time and thank goodness for technology because we “facetime” all the time too so I still get to see her. I love my mom. It is just better that my dad goes with me because he is better able to handle things if something ‘bad’ happens whereas my mom definitely doesn’t want to be alone if something should happen and also my dad is better able to take care of me in that he can ‘carry’ me and such whereas my mom can’t. So.. it is just better after all if my dad goes. Also… we really need my mom home to pay the bills because if my dad was left to do it, he wouldn’t have the slightest clue what to do.
I am really nervous about having the surgery and like I said before, I really don’t want the colostomy. I have had countless talks with my dad and told him my wishes, but of course my dad isn’t listening. He says that ‘whatever needs to be done is going to be done.’ I really don’t want it and since my dad won’t listen to me, I keep saying how I am going to write across my abdomen “NO COLOSTOMY” so that they all know not to give me one in the operating room. Of course I am only joking, but I really hope that my dad thinks twice before he makes this decision should the need really occur because I really don’t want one.
My dad loves me so much and he just wants me to be around. Everyone knows that if something happened to me, he would never be able to live. I know he loves me and doesn’t want anything to happen to me, but sometimes I just wish he would just listen to my feelings. I know he doesn’t want me to intentionally suffer, but sometimes he is just so selfish because he doesn’t want anything to happen to me. It hurts him so much that he can’t do anything to help me. He would literally go to the moon and back or cut off his arm if it meant that he could help me by doing that. I hate it that I can’t get better no matter how much he tries because I know how much it hurts him. He is one of the major reasons why I keep going and why I don’t give up. He is the one that keeps me pushing. In fact, one time when I was thinking about signing the DNR (Do Not Resuscitate) papers, I looked at him and then I couldn’t because I saw how much it would have hurt him. I love him way too much to hurt him and leave him. I know how much I mean to him. I want more than ever to be with him and especially for him to see me become that doctor that I so dream to be.
But of course like I said… getting well and treatments also depend on money and it hurts him so much that he can’t give me all the money in the world to help me get the necessary treatments that I need. He works so hard to try to get me the treatments, but in reality… it never is going to happen. It hurts me so much to see him work like a dog because he works 7 days a week just to try to get me the needed treatments and to help pay the bills and yet it isn’t even cutting it. I am even so afraid that something is going to happen to him because he is no youngster and it isn’t like he is sitting at a desk all that time. His job is all physical and he is up at 3 AM, out the door at 4, and doesn’t come home until 7 PM. He just works, works, and works with never a day off. IF something ever happened to him, I would never forgive myself. But he is always willing to put my needs before his own. He is one amazing dad and best friend.
Therefore, I really need help. No matter how hard we try to cut it… we just can’t afford the necessary treatment that I need. Not only do I want to live so that I can achieve the dreams that I have like become that doctor that I want to be so I can help others, but I don’t want to leave my family either. We are trying every which way to raise money, but nothing really has been successful. If you have any ideas, please let me know. In the meantime, please continue to spread the word that I need help and donations are very much welcome.
Also… please say a prayer because at the very least… they are free and can be extremely helpful. Prayer is an essential tool for healing. Prayers are helpful because they are extremely powerful. It gives strength and guidance to raise you up from difficult circumstance, as well as it also gives hope, courage, and support.
Well… until next time… thanks for supporting me and encouraging me.