Happy 4th of July!! Just wanted to wish you a very happy 4th!! As for me… I am here tonight hoping and wishing that the pain will pass and hoping that something will just ‘knock’ me out. I am doing worse than usual because unfortunately I had a little accident today and it really has cost me big time. The pain and discomfort that I have been experiencing lately have been so bad that I have been wondering that if it is even worth being here. It has been so bad that I have literally just wanted to ‘give up!’ Now with this added pain and discomfort, it is really pushing my buttons. However, even though I have wanted so much to give up and have contemplated it, I always end up continuing to push forward and continue to push onward because I realize how important I am to the world thanks to all your support and encouragement as well as the huge love, support, and encouragement that I receive from my family. I know that my dad would never be able to live without me and therefore, I keep pushing onward… hoping for a day that I will be helped and without pain. After all, like I said before… I have so much to still give to the world and yet experience. I am going to become a doctor so that I can help others and they don’t have to suffer the same fate that I have been suffering.
Well… like I said… I am really doing horrible. Unfortunately, I am doing worse than ever because I had that ‘ car accident’ in May. Ever since that time… it has been all downhill. My body is just continuing to deteriorate at a rate that I can’t even keep up with anymore. My body is just literally falling apart.
Ever since accident, the pain has been out of this world… even more than before. I didn’t even think that was possible. I am literally climbing the walls and nothing that I do is helping. I am maxing out on all my medications and even popping Tylenol like candy because it is all that I can do in hopes that it might help with the pain since I can’t take anymore of my ‘pain’ medications. I am only hoping that nothing will happen to my liver with all the Tylenol that I am taking but to be honest… there is no other choice. Something has to be done because I won’t be able to even exist if I didn’t take the Tylenol.
Like I just said… I am really in a lot of pain and in worse shape than ever. Ever since the accident, my body is just continuing to just deteriorate. Lately, my right knee has been giving me a lot of problems. I felt a ‘rip’ when I had the accident and I was hoping that it was nothing with nothing especially since it was my better of the two legs and depended on that leg to walk on since I am on crutches and needed that leg to lean on. There is no way I can put pressure on the other leg so I was hoping that it was ‘nothing with nothing’ because to be honest… I can’t afford anything to really happen to this leg that would cause me to not to be able to walk on it because even though I have this disease in that leg as well, I continue to push through it because I know without walking on this leg… I have no other leg to walk on. I know that it would only mean being in a wheelchair, which is something I have been fighting. So I was just hoping that what I felt in the accident wasn’t really something ‘serious’ and would just go away. I was hoping it was just a ‘bruise,’ but apparently it isn’t.
I never got my right knee checked out to see exactly if it was a ‘tear’ or something else was wrong with it because you know the saying… “What you don’t know can’t hurt you.” I really didn’t want to know because I figured that I would just pretend that there was nothing serious wrong and this way I would continue like I always did because I couldn’t do anything really to it anyway because it would mean not being able to ‘walk.’ I also thought that perhaps I would be able to push through it and whatever it was would heal by on its own. But apparently it didn’t, and it only has gotten worse.
The knee is so bad now that I can barely walk on it. It is at the point where something needs to be done because the pain is excruciating and continuing to worsen. I am really thinking that it is going to need medical attention and something to be done, which scares me because like I said… this is the leg I depend on because I am on crutches. But… I think it is at the point that there is no other way. So… I think that I will be making an appointment with the Orthopedist on Friday for this knee. Hopefully it isn’t anything serious, but we will see. What a disaster!
In addition, I have been suffering from back spasms ever since the accident as well!! However, even though I thought that this would get better within time, it has only worsened as well too. I can barely move my upper body or breathe without being in so much pain. It is bad enough that moving causes me so much pain that I want to climb the walls, but now it hurts just to breathe. I can never catch a break! Something has to be done because to be honest… I don’t know how much more I can take!!
I haven’t been able to do anything since the accident except lay on the couch really because the pain throughout my body has been worse than ever. Whereas before I was able to get off the couch and do stuff minimally… it has really become even worse. Every time I think it can’t possibly get any worse… it somehow can. I just wish that it would just disappear because I don’t know how much more of this I can take. I lay around crying and screaming in pain because that is all that I can do. I plead with my dad to “please help me” but unfortunately there is nothing that he can do. I know his hands are tied and if there was anything remotely possible he could do… he would definitely do it. It pains him so much that no matter how much he would love to help me or even take this disease away from me for even a minute… he can’t do any of it. All my dad can say is “Do you want me to take you to the hospital” even though he knows that isn’t really an option because there really isn’t a hospital in the local area that can help me and it would mean traveling to get to a hospital that could help me, as well as it costing our family lots of money too, which is money we don’t have!! Plus… in the end… going to the hospital wouldn’t even ‘help’ because the real help is way too expensive and can’t be done by just checking into a hospital and going trough an emergency room. To really ‘help,’ I would need a huge intensive ketamine coma, as well as a multi-organ visceral transplant, which are both two radical and expensive procedures that need to be planned in advance. All the other treatments are just ways of hopefully ‘buying’ me time and hopefully to make me more comfortable.
With all that I am suffering, I have been on every medication out there and nothing has really helped me. However, there has been one medication that the doctor has prescribed known as nasal ketamine spray, which the doctor has given me at my last doctor’s appointment in hopes that it might help me. Since ketamine is basically the only medicine that really helps, he is hoping that the nasal ketamine spray would help make a difference even though it is no where near the dose I get when I get it through IV. But… it is definitely worth a try. He is hoping that spraying ketamine nasally might help give me the little relief that would make such a difference. The only problem is that there really is no place to fill it.
Ketamine is the one drug that is so difficult to fill. When I say that I am on ‘ketamine,’ no one can believe that I am on it because it is the same drug that they give to cats and dogs to put them to sleep, as well as also known as a horse tranquilizer. Ketamine is also the street drug known as ‘special K’ and is used because can cause dream-like states and hallucinations. Users report sensations ranging from a pleasant feeling of floating to being separated from their bodies. Some ketamine experiences involve a terrifying feeling of almost complete sensory detachment that is likened to a near-death experience. These experiences, similar to a “bad trip” on LSD, are called the “K-hole.”
However, it is a drug that is extremely hard to get. It appears no pharmacies even carry it. In fact when the doctor gave me the prescription, he even told me “good luck getting it filled” because he knew how difficult it was to getting it. I tried all the local pharmacies in my area from the private individual ones to the huge chains like CVS, Rite-Aid, Duane Reade, etc. I even checked online to see if I could find a pharmacy on the Internet that could fill it. You know it is difficult to fill when you can’t even find a pharmacy on the Internet to do it. But after careful looking, I finally found a compounding pharmacy that will do it for me. It took me awhile to find one because not all compounding pharmacies even do it and then when I did find one I had to find one that was in New York because even though it could be ‘shipped,’ the drug is not allowed to cross state lines. But at least I finally found a place that has the drug and can compound the medication for me. So… I will hopefully be getting it Friday or Saturday.
The only bad part about this is that like always… nothing comes without paying a price. I never get any ‘good’ news without it coming along with ‘bad’ news. Even though I am getting the ketamine, which is definitely good news, I was told that of course my health insurance will not cover this much-needed drug. Therefore, it means that in order for me to get this necessary drug that I desperately need, I will have to pay completely out-of-pocket and it definitely isn’t cheap. We are having a hard enough time paying for treatment as it is. We can barely afford the mortgage and having trouble paying that. We are having trouble even putting food on the table. The bills are just adding up. And now we have one more bill to worry about and add to the pile!! But this is just a something that is a necessity and we need to find a way of paying for it. So this just shows how much we need help from others. We need donations so desperately because my life depends on it. All my treatments are so costly and we cannot afford it. Not only can we not afford the surgeries, traveling expense, hospitalizations, doctors, etc. but we can’t afford the medications that I desperately need as well. Everything is just so costly and just adds up.
I kind of had a feeling that we were going to have to pay out-of-pocket for the ketamine. But I was hoping that I would be wrong. So I am hoping that I will receive some donations from people that will be able to help us out. I really need help from others. It is more important than ever because I am really getting sicker than ever and without the help of others, I fear that I am not going to be able to continue receiving the necessary medication or treatments that I need in order to continue my battle.
Donations are more important than ever right now… especially since I am deteriorating. We have a lot of upcoming treatments planned and they are costly. The doctors are saying that unless I receive treatment soon, my body isn’t going to make it because it is just shutting down. So I am pleading with others to please donate. I have made a video in hopes that it will reach out to people and hopefully bring in donations. I know I have tried other mechanisms to raise money like Facebook, writing to the media, hanging posters, etc. but nothing really has worked. I figured that video is more important than readings and if people can see exactly what I am going through, and then perhaps people would be more inclined to “help.” I was also hoping that the media would be able to pick up on my story and possibly be able to help me out as well because that would definitely be the biggest ticket in getting help with the donations that I need. The more people that are aware of my story… the better I will be and what better way is there then through the media.
I have been wanting to do a video for a while and have seen that I had a program on my computer called “iMovie” for a while. However, I was always intimidated by it because it looked so difficult to use. But with getting worse and not being able to really move and do anything, I figured that learning how to use the program would give me something to do and it would also possibly take my mind off of things. So that is exactly what I did!! It was so much fun to use this program and I made 2 videos up about my illness and asking for help. I must say that I did have so much fun and I really plan on doing more because of how much I enjoyed making it. But in the meantime, I am really hoping that these videos will reach out to people and really help me. If you want to check them out, please feel free to at: http://youtu.be/aDxDpsMck4Q and http://youtu.be/eScaKUcIcNk. Feel free to spread these sites as well. I think that the first video is the best. What do you think?
People think that I am not doing all that I could be doing to get well. People think that since modern medicine has come a long way that if I am still suffering, it is because I must not be doing what their doctor is telling them to do or I must not be trying very hard to get well! After all, we are a world that is accustomed to popping some pills or vitamins and we are back in the race, feeling like our determination could defeat any viral army. After all, we did not stay sick for long because we acted, had a positive attitude and by gosh “we were not going to let any illness keep us down!” However, the truth is that with me… many times the doctors do not even know what to do. In addition, even though there have been advancements in medicine… the truth is that the advancements have only allowed people to “live” with the illnesses. Even though people are being kept alive with drugs, surgeries and treatments, these improvements have not been sufficient to cure them.
Most people don’t really understand my illness or how bad I am suffering because when they do see me, I don’t look as ‘sick’ as I am. I try to always put on that façade in front of people because I don’t need people feeling ‘sorry’ for me and I truly believe that if you ‘look good’ you ‘feel good.’ It is just plain miserable to be sick, in pain and debilitated – nobody enjoys it. Therefore, I try not to focus on it because I try to escape it as much as possible and I know that no one really wants to hear it.
Often people think I am either exaggerating or not doing something about being sick when they come across me. After all, when they got sick, they got some rest, took some medication and were soon back on their feet. Moreover, when they were sick, they were pale and droopy, but I often look “perfectly normal” besides being on crutches and too thin. The truth is, most conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew. For instance, a person can battle extreme fatigue and/or cognitive impairments on the inside, even though they may appear healthy and well on the outside. Just the same, a person can have horrible pain and/or dizziness, despite the fact that to the onlooker they may look strong and able. Therefore, no one really understands what I am truly undergoing and how horribly I am in pain and how much my body is shutting down because I put up such a ‘front.’ People like me that are living with an illness do not want to give up! I am always making an effort to laugh, smile, look my best and enjoy life, even though they know they will pay dearly for it. II do this all so that I can try to make my illness seem invisible to the rest of the world and not make others suffer with me. I even try to do this with my family because I don’t want them to see me suffer. As long as they see me smiling, they don’t know exactly how much I am really suffering in the inside because it hurts them so much to see me suffer.
I really need as much help as I can get because I have a lot of upcoming plans and it will be extremely costly. Not only do I need help paying for my current treatments, but also like I said before… I need help paying for the ketamine that I plan on receiving in the next few days, as well as the upcoming surgeries that are happening. I am also going to be having the intensive ketamine coma soon and need the funds for that as well. Everything just keeps adding up on top of my usual copayments, medications, doctors, etc.
Like I said, I have upcoming surgeries. I am supposed to be leaving Thursday (1 week from today) for John Hopkins Medical Center. Yup… dad and I are off again!! I am really nervous because I don’t know what to expect. We are going there because it is one of the top GI centers on the East coast. I also need emergency surgery because they know I have an obstruction in my colon. However, they aren’t sure if it is an obstruction or a colon twist. Doctors were always fearful that I would end up getting a colon twist because I was filling up with so much air in me. In fact, when I had x-rays taken, there was so much air in me that the doctors could see so much air pockets that were compressing the organs and shutting them down. Some doctors were even fearful to do anything because they feared that if I ever needed surgery that something horrible would happen from all that air buildup and extra pressure that was being exerted in me. Doctors were really amazed by the x-rays when they saw them and how much air would be in me. However, they also said that this air buildup not only was shutting down my organs because they were compressing them (even my heart), but they were scared that it was going to lead to a colon twist. If that should happen, I would need surgery immediately because I could easily die from a colon twist.
I had the x-ray taken at the MAYO CLINIC and it did show either a obstruction or colon twist. They were leaning more towards a colon twist, but they weren’t completely sure. They needed a follow-up CT scan to confirm it, but I haven’t had one done yet. I am really nervous about having this obstruction/colon twist because I am so scared I am going to end up with a colostomy. This is the last thing that I want. So even though I have been suffering so much and know how much of an emergency this is, I really am in no hurry to have the CT scan because no news is good news. You know? Once I know for sure that it is an obstruction/colon twist, I will have no other choice but to go for the emergency surgery.
Plus… I can’t have the surgery at any hospital. I am so medically complicated and my situation is so difficult that I really need to be at a top-notch hospital that can deal with not only this surgery but also my overall situation. Even though I might have a top-notch surgeon my bowels, I still would need doctors that would be able to handle my other conditions and would need specialists familiar with my other conditions such as my neurological disease, autonomic dysfunction, pituitary brain tumor, osteonecrosis, etc. because one thing sets off the other like the domino theory. Going for surgery can easily harm and kill me because not only is the surgery risky in itself, but also I am in no condition for surgery either. I am medically unstable because of my bloods and weight and how my organs are functioning, as well because I suffer from these other conditions as well. Any little surgery is a major surgery because of how hypersensitive I am and because of how medically complicating I am. Having just the autonomic dysfunction alone complicates things like you wouldn’t believe because it sets things into motion by just the littlest things. When I go for surgery, I am such a big risk and anything can happen that I literally need a huge team in the OR itself. I usually have like 4 anesthesiologists alone.
I am really nervous because I am scared I am going to have to get a colostomy. I really don’t know if this is something I am going to be able to handle. I have had tubes in the past and having a colostomy is definitely worse. I have even told my friend’s daughter when she had a colostomy bag that “I give her a lot of credit because I don’t know how I would be able to handle it.”
I can’t believe how they are planning on making me so inhuman. I feel like they are just taking me apart and making me so abnormal just so I can exist. When I go to California, they are planning on putting tubes in me to ‘feed’ me so that they can buy time. The tube will go into my intestine. They are hoping that they will be able to drag a tube from my nose, through my stomach, and into my intestine and find a small viable piece and the end so that I would be able to get some food since I weigh so little and my BMI is only 10.8. Since my GI tract is essentially dead, they are hoping that by dragging this tube through to the end of the intestines that they will find that small viable piece. Then besides that tube, they are planning on putting a tube in me that will ‘vent’ me. I can’t move the gas that builds up in me and as a result, I get extremely distended and uncomfortable. I literally blow up and I look and feel like I am 9 months pregnant and ready to give birth. Therefore, they are putting in a tube to ‘vent’ me so when I get this buildup, I will be able to open the tube up and the air will e able to come out. Finally, they are planning on putting in a PICC line and central line because this way the doctors will have better access to my veins since I am deteriorating. Since I am worsening, they feel it would be better to have this direct central access because my veins aren’t holding up anymore like they should be and if something should happen, they would be able to access me immediately. So… between all those tubes and then the colostomy on top of it… I just don’t feel like a ‘person’ anymore. What kind of life is that?
Sometimes I wonder if that is really a life that I want to live. Sometimes I wonder if it isn’t just better to enjoy whatever time I have left and be as ‘normal’ as possible. But, there is no guarantee that a colostomy bag is going to happen and I am praying and hoping that all this worrying will be for nothing because it won’t have to happen.
Like I said before… we are heading down to Baltimore, Maryland on Thursday because we are going to John Hopkins Medical Center. I am nervous because like I said… I don’t know if they are going to do the emergency surgery when we go there or they are going to just wait until I get to California because we are supposed to go to California shortly after. We were supposed to leave for California on the 21st, but of course if I end up having the emergency surgery at Hopkins, we don’t know if that trip to California will end up even being possible because of how close it is afterwards. So… I guess we will have to see what happens.
I am really nervous about missing the trip to California too because right after we go to California, my head GI doctor is leaving Stanford. Therefore, if I don’t have the necessary surgeries that we have planned in California during that time, I don’t know what is going to happen because my doctor won’t be there anymore. We asked my doctor where he will be going because he said that he has been offered other jobs at other hospitals, but he hasn’t told us where he is going because he said that he hasn’t made up his mind. I am scared that possibly he either might not be practicing for awhile and might be taking some time off before resuming his career at another hospital because he still doesn’t know where he is heading and as of August 1st he is no longer at Stanford, or I am scared that possibly he is going back to Africa since that is where he is originally from. He is a phenomenal GI doc and very well known. He set up this entire GI program in Africa that is extremely successful. Plus, I also have to go to a hospital that can handle my overall condition like I explained earlier. I need to go to a hospital that can give me ketamine infusions if needed, etc. Not many hospitals are knowledgeable about my other conditions and therefore, if he goes to one of those hospitals that aren’t familiar with my other conditions, I don’t know if it will be smart or possible to go with him to that hospital. You know?
So… I guess we will have to see what happens! I am also nervous about what is going to happen because we are only booked at the hotel in Maryland for a few days and if I end up needing a lot more days because of the surgery and such… I don’t know if it will be possible because they are extremely booked. I guess Baltimore is a very popular place because it is the summertime. I know that it is definitely expensive because the hotel is costing an arm and a leg. Thank goodness the manager is giving us a break.
Like I said before… we are leaving Thursday for Baltimore, but the appointment with the GI team is Friday. We are also meeting with the team at Hopkins because we need a team on the East coast in case something should happen to me. Hopkins would be the closest hospital that could handle me and therefore, even though I might be able to go to Mayo Clinic or Stanford (well up to this point until my GI doc leaves), if there is an emergency… Hopkins would be the place to go. Anyway… since we are going to be there a day early, I am planning on hopefully walking around the harbor with my dad. Even though I hate going away to hospitals and going for treatments because I hate the traveling and such, at the very least I get to spend time with my dad. I love being with him and it is really nice that we get this bonding time. My dad and I really have an amazing relationship. Without my dad… I definitely wouldn’t be here. He is the reason that I am here. He is not only my dad, but also my best friend, my knight shining armor, and the person I admire most. He is really the best.
My dad has really given up a lot for me and it terrifies me that something will happen to him. He is under tremendous pressure because of what is happening to me, as well as the financial pressure of the business. Since I am so very sick… he has been the one traveling with me and as a result, he has to take time away from work. When he doesn’t work, of course that means that the business doesn’t function the way it should and we don’t make an income. There is no one really to do the work that comes in and people don’t want to wait for my dad to come back. Therefore, we end up on losing out on so much work even though my mom stays behind to try to manage the office because even though she is there to answer the phones and such, there is really no one to do the ‘work’ and no one really wants to wait around for someone to come to their house… you know? So my dad tries to make whatever money when we are home and works himself like a dog. He is up at 3 AM, out the door by 4 AM and not home until 7 PM every day of the week except Sundays. Even though he may not work all those hours though on a Sunday, he still is up at that hour to work though and still puts in a workday on that day though. My dad is no youngster and it really scares me because he gets no ‘rest.’ His job is all physical and he never rests. If something would happen to him, I would never forgive him.
Living with a debilitating condition can be very challenging! I struggle with getting through a day, not being able to work at all, trying to clean the house or make a meal, shopping for simple things such as groceries, being faced with medical bills, doctor appointments, insurance claims, medications or even just having the energy to go out. Yet, despite it all… my family has been there for me. My family really have given up their lives for me, as I can’t remember the last time we all have went on a vacation, went to a show, went out and did something ‘fun’, went out to a restaurant for a meal, etc. All my family does is go to work and then come home to sit in this house because I cannot do many things. So instead of just leaving and going about and doing things by themselves without me, they have given their lives up to be with me. I can’t thank them enough for not going on and not including me on things, but I must say that I am still upset because I know how much it hurts them that they had to give up so much of their lives. You only live once and to not to be able to do anything ‘fun’ and to be only stuck in this house besides when they go to work… it just isn’t fair to them.
No matter how many times my family has told me that I am not a ‘burden’ on them… I completely feel that I am. No matter how many times my family says they love me and want to help me get through this and that they don’t mind… no matter how many times they say they want me living with them and want to go with me to the doctor or hospital, or that they don’t mind helping me walk with crutches because there is a risk of falling due to weakness or a black out… no matter what they say, I still feel like a burden. I feel guilty having them always have to care for me, have to carry things for me, having them stop what they are doing because I need something. Living with my illness makes me upset because makes you sad because I see how your family is stressed from making phone calls for you because your medications make you forget important things and you can’t think clearly or make sense. I feel ashamed when I do try to help but don’t do as good of a job at whatever it may be, whether calling to make a doctor appointment or something simple like putting your clothes away. Living with RSD makes me fragile, not only physically but emotionally as well. When someone gets mad at me for whatever it is that I did or didn’t do, it hurts… More than it should. People mistake this as self pity, but it’s not. What makes me feel bad isn’t that I have this illness but more so that that everyone else has to cope with it too. My disease has taken not only my life, but also the lives of my family. When you have my disease it is like not being able to live.
That being said… my parents’ birthdays are approaching and I really want to do something special for them. They are both going to be turning 60 and it is really a milestone in their lives and they should definitely celebrate it. My mom’s birthday is August 9th and my dad’s birthday is the following month on September 9th. They have given up so much for me that I really want to do something special for them. However, between the finances and what I am capable of doing… I really am strapped. If you have any suggestions, please let me know. It really hurts me that I can’t give them what they deserve.
Well… I guess I better get going. It is getting late and I am going to rest. I hope you enjoy the 4th of July. I would do anything watch the fireworks. That used to be one of my favorite times of the year. I remember when I used to make my grandparents and parents drive all over the place when I was younger just to see the fireworks. I also remember when I was younger how my brother used to get a whole box of his own fireworks and he used to set them off in the street… which gave my entire block and me an amazing show!! Not only would we have the firework display that my brother did, but we used to hold sparklers and dance around on the outside with them making all these different designs as we twirled them in the air. I remember loving to watch the colors, sparks, and other effects that they emitted. Moreover, I remember my mom always buying us those ‘snap-pops.’ You could throw one of these novelty explosive snap pops on the ground, or snap them with your fingers, and the snaps made a popping noise. I used to go crazy over those pops and my mom would load up on boxes of them for the fourth. It was the best. Gosh… those were the good times. Those were the times before I was sick. I would do anything to go back to those times. Now I don’t even think I would even be able to withstand holding a sparkler because it would clearly burn me because of the extreme hypersensitivity that I have. Plus my hands aren’t even that stable to hold it or strong enough.
Now I am just forced to watching the fireworks on TV and even that will probably be impossible. The Macys Fireworks show happens to be the same time that I take my medication and I can’t afford not to take it at that time. However, when I do take my medication, they end up knocking me out for about 30 minutes afterwards. It is the only ‘rest’ I get because once I wake up… I am up for the rest of the night. So… I bet I probably will miss out on watching those magnificent fireworks too. I guess there is always a DVR for recording though even though it isn’t the same as watching it LIVE.
Anyway… thanks again for all your continued support and encouragement. When I know more information, I will let you know. Please continue to pray for me because your prayers are much needed. Please spread the word of my videos as well because the more people that know about it on YouTube, the better I am. Please also spread the word of my website because each $1 that I raise is one less that I have to come up with and makes a HUGE difference. Please help because my life depends on it!