Well… Just as promised… I told you that I would update as soon as I had news. However, before I update you on all that has happened today, I want to let you know that I am thinking about taking a new approach to my blogs and Facebook account. Instead of just writing about the “happenings” and all the “bad” stuff that might be occurring, I am going to change my website into showing more of my entire life and show how hilarious it actually is. I am going to show you how it is more DYSFUNKTIONAL then ever and hopefully show you videos of doing some things as well.
I really want to make a mark in the world and have been thinking of various ways of doing so. I also want to bring awareness to my illness because not only could it possibly bring attention so that I can possibly be helped, but maybe I can help others because not much is known about this illness and I can show others as well what it is like to live with a horrendous life-threatening disease and life like this. I can show people that even though you are dealt a bad deck of cards and your life is totally DYSFUNKTIONAL, it really is still your life and it still is never ‘over’ until the fat lady has sang and there is still so much that you can still do even when the road look soooo gloomy. I want to show people that even though you may be dealt a bunch of lemons, you don’t have to be sour over everything. Instead, you can just pick yourself up, stop feeling sorry for yourself, and move on! There is always something that can be done, as you can always make lemonade out of lemons instead of letting them sit there and sour!
So… as I sit here tonight, I was thinking about all the hardships and difficulties that I am going through and decided that I am going to change my blog Facebook page not to just share what is happening in my life, but as a way to give people a ‘laugh’ of all that is happening as well. After all… ‘laughter’ is the best medicine out there. I have so much to deal with and I know that seeing all these posts can sometimes be annoying and I have gotten harsh remarks from people because they don’t realize the life I am facing or the hardships I am enduring. No one really knows what it is truly like to suffer like I am doing until they actually walk in my shoes (and hopefully they never will have to actually experience it).
That being said… let me tell you that having so much to deal with only has made me a better person, and I don’t give a rats ass what ANYBODY thinks about me posting or writing about on my blog page. I know what living is like in MY body every single day… and I really don’t have to answer or explain myself to ANYONE!! Nobody has the right to judge you in any way, shape, or form… tell you WHAT you should be feeling… or anything else. I know what I AM feeling… and I don’t have time for people who won’t take time to listen, understand, and educate themselves! I need to keep swimming and keep going because this is my life! When push comes to shove, the only person that matters at the end of the day is ME!!
Sitting here tonight, I have realized how DYSFUNKTIONAL my life really is. Not only am I living with a lot of chronic illnesses, as I have a severe life-threatening neurological disease known as Reflex Sympathetic Dystrophy, severe autoimmune autonomic neuropathy – severe Gastroparesis (my stomach is paralyzed and they want to do multivisceral transplant on me), severe Autonomic Dysfunction, Osteonecrosis, Pituitary Brain Tumor and lots more… but my Autonomic Nervous System is in a constant state of chaos, as it fires signals constantly and everywhere. I have little control l the signals and messages sent from my brain and therefore…All the signals and messages sent from my brain do whatever they feel like it! So in a nutshell I have little or no control over my body!
I am in severe and excruciating pain 24/7, I vomit constantly and can’t keep any food or drinks down, I collapse daily, I use crutches to get around, my blood pressure is extremely low, I have severe bradycardia, I have abnormal blood values so that the doctors are worried about my heart stopping and of me having cardiac arrest, I am extremely hypersensitive as the most innocuous touch is extremely painful to me and I can feel absolutely everything and anything (even the breeze from a door closing or the heat from someone putting their hands around me and not even touching me), I can’t sleep, I spend most my life in and out of the hospital, my calendar is filled more of doctor appointments/procedures than of fun social events, I have a headache nonstop every day, I take over 50 pills daily (including methadone, morphine, dilaudid, nucynta, etc. — and I am on more meds than can kill a horse), I go into ketamine comas/infusions, and well the rest you’ll just have to pick up if you get to know me 🙂
But what does this all mean? It means that my life is basically totally ‘dysfunktional’ and unless something is done to cure me… I am rapidly deteriorating until I will eventually leave my body and body and move on to hopefully a body that I can control. But don’t worry… I don’t let this get me down, as I want to make a difference in the world and do as much as possible… even if it means making people aware of my illness and laughing because ‘laughing is the best medicine out there!’ So I decided to change the way things are going as a way of not only bringing awareness to my condition and showing all that I am experiencing, but also as a way of letting you experience an unbelievable journey… a journey that I am sure will give you a few laughs along the way! I don’t care what anyone thinks of me…I know how I am feeling in MY body and I am doing my best to survive on a daily basis. If people can’t accept that, well they move on to the next page.
Anyway… I guess I will now tell you all that has happened today. It is officially confirmed that HOPKINS is canceled for Sunday. I am kind of disappointed, but it is probably for the best. It is canceled because I am going to be going for mega surgeries soon and I am going to have to be seen at another hospital known as Georgetown in Washington D.C. Let me explain.
First of all… let me tell you that surgery has been scheduled for Tuesday, August 27th at Winthrop. It is 99.9% certain that it is a ‘go’ but of course it is all contingent that I get all and pass all of the pre-surgical testing. I also have to go for a trial surgery this upcoming week and providing that we have no real complications and the medication doesn’t prove to cause too many problems, it will further determine if surgery is a “go” for the 27th.
I saw the neurosurgeon today and it appears that he will be implanting the pump in me on August 27th at Winthrop Hospital. I can’t believe that I am at least going to be able to have this surgery in New York. I am so glad because this way I am close to home and I will be able to have the comfort of my entire family being there. Usually I only have my dad with me because my dad is the one who travels with me across the country. However, now that I am close to home, I will be able to have as many visitors as I want and I will especially get to see my family, which is very important to me. It gets so lonely and scary in the hospital, so to be able to have visitors (especially my family able to visit), it really is a plus. Usually I am so far away that the only visitor that can come is my dad.
I will be having a pump placed in me, which is an automated piece of equipment that is programmed to deliver medication into the spinal fluid through a catheter. Unlike medications that circulate throughout your body in your bloodstream, drug delivery therapy releases medication directly into the fluid surrounding your spinal cord, which may lead to fewer or more tolerable drug side effects. The pump releases prescribed amounts of pain medication through the catheter directly to the fluid around the spinal cord, in an area called the intrathecal space. The pain medication approved for use in the pump includes morphine sulphate and ziconotide.
Since I am deteriorating so much, they think that I desperately need this pump because it is at the point that I am having too much trouble swallowing my medication. In this way, I won’t have to swallow the medication, as it will be delivered directly into my spinal fluid. It will also be more powerful and potent than taking pills, which is something that I desperately need. The illnesses have become way too painful and it is at the point that nothing is helping to alleviate the pain even a little. I am literally climbing the walls. Therefore, they are hoping that by getting the pump, it will give me better pain relief. The doctors are also hoping that the medications will be able to possibly work better because I will not have to absorb the medication through my digestive tract first, which is paralyzed and then go into the bloodstream. I can literally swallow my bills and when I vomit over 12 hours later, I can still see my pills that are not dissolved. By having this pump, it will bypass the digestive tract and I won’t have to worry about pills having to dissolve. Finally, it will also cut down hopefully on the amount of medications that I need. I take over 50 pills daily and I am on high doses of meds, which also cause further problems. After all, nothing ‘good’ comes without paying a price and of course all medications come with side effects. Unlike oral medications, drug delivery therapy releases medication directly into the fluid surrounding your spinal cord rather than traveling throughout your body in your bloodstream. This may lead to fewer side effects, such as nausea and constipation
The surgery is very dangerous in itself, but it is even more dangerous for me because I am not like the typical patient. I am medically unstable, I only weigh in the 60s, I am malnourished, and I have this illness that worsens and spreads like a wildflower if any trauma occurs. I also have severe autonomic dysfunction and as a result, it can cause many complications during the surgery especially changes in my blood pressure, heart rate, etc. at any time that can easily throw me into cardiac arrest and stop it. I am already in extreme pain 24/7 and going through surgery will only make things worse. Not only will the surgery in itself be dangerous, but so will the recuperation and recovery because I don’t have the ‘reserves’ such as the nutrition and ‘fat’ to recover. I can easily catch an infection and if I do suffer any complication whatsoever, it can easily become life threatening because anything minor is something major in me because everything is scaled upward in me due to my illnesses. I also risk getting inflammatory masses at the tip of the catheter, which may lead to complications, including paralysis.
Not only is the actual surgery dangerous, but I will also be having a hardware being placed in me. That means that there will be a foreign object being placed in me. Not only do I run the risk of my body rejecting it because my illnesses do not tolerate foreign objects (it doesn’t even tolerate IV lines), but I also run the risk of infection not just from the actual surgery itself, but from the device afterwards as well. Since I am so thin, I don’t really have any cushioning or padding for it and as a result, it can easily erode through the skin. That being said, it can easily become infected or cause additional complications.
The doctors are extremely fearful that I am going to have many complications of having the pump implanted because I am so thin such as the catheter or pump moving within the body or wearing through the skin. The catheter could even leak, tear, kink, or become disconnected. That being said, the neurosurgeon has arranged for a plastic surgeon to be in the room as well during the operation because he is going to try to help fit the pump in me since I don’t really have the space necessary for it. The Plastic Surgeon is going to try to build me up an area that will have more cushioning and padding and hopefully be able to fit the pump better in me.
I can’t believe that I am going to have a Plastic Surgeon in the room on top of everyone else. It is going to be like standing room only in the room because there are going to be so many doctors in the room due to my complex condition. They will need a separate doctor to monitor each aspect of me and they will even have a backup in some of the specialties that are in the room just in case they run into a problem. For example, there is going to be more than 1 anesthesiologist in the room because if there is a complication there will be someone there to help the other anesthesiologist out.
I just never thought that I would ever be having Plastic Surgery. I made a joke when I heard that I was having Plastic Surgery and I said that I was making a list of all the things that I wanted to have done when I was under. I told the Plastic Surgeon that I wanted to have my nose redone, breasts implanted, a face-lift, etc. He thought it was really funny. Even though this pump is going to be extremely prominent in me, I really hope that it works.
So I will be having the surgery on the 27th and it will be a long day. I will then be put into the ICU because of how hard the surgery will be on me. I will also be given ketamine during the operation and afterwards to try to keep me comfortable and as a way to try to not spread the disease, as any bit of trauma can potentially spread my disease and surgery is extremely traumatic and basically a ‘guarantee’ to spread it. So hopefully by taking all the precautions with the ketamine (by having it during and after), we will be able to control the illness and have it not spread.
Of course this surgery on the 27th is contingent on being able to tolerate the trial. I have to go into the hospital for two days this upcoming week so that I can be given a ‘trial’ of morphine because it is the law to be able to tolerate morphine intrathecally if a person is to get a pump placed in them. Even though I will be getting additional medications placed into my pump, I have to at the very least be able to tolerate the morphine if the doctor is going to be able to implant the pump. So I have to go for this trial and be monitored because a lot of complications can arise from getting morphine intrathecally, as it is extremely dangerous. A person can easily stop breathing or have severe side effects or have their heart stop from it. However, since I cannot really tolerate an IV line because of how hypersensitive I am, the doctors said that they will keep me as ‘drugged’ up as possible and give me plenty of valium and other goodies while I am in the hospital so that I am not bothered by the IV lines or the other stuff that is occurring while I am there for the trial. But if all goes well, then the surgery appears to be all set for the 27th. I will let you know when the trial is set for when I get the date. I probably will get the date on Monday!
I am kind of really excited to get the pump, but also really nervous. Besides the actual operation, which I am extremely nervous about, I am really nervous about how it is going to feel inside of me. I am so scared it is going to hurt me every time I move because I have to padding or cushioning and I it is basically going to be rubbing on my skin constantly and touching my organs. I am only hoping that I don’t develop any further complications such as erosions or anything because of all this ‘rubbing’ because I am so thin and everything. But hopefully that with the help of the Plastic Surgeon… all this can be taken care of.
Even though I know that this pump is going to be extremely visible because I am so thin, I am still wanting it because I am so desperate for something to help me since I am suffering so much. I really can’t stand swallowing my medications anymore and this way I will be able to avoid it. The only thing that stinks is that I will have to have the pump filled every month by the doctor, which entails getting stuck with a needle and having it filled that way. I just hope though that they will be able to hide the pump as much as possible because even though I don’t care how it looks, I don’t want it to look like a third boob because I am so small on top and so thin that it probably will look like I have three boobs except one is below the other two.
In addition, the neurosurgeon proposed to do brain surgery on me. It just never ends. It appears that after this surgery that I am more than likely going to need brain surgery. It is considered experimental, but when you are at bottom of bucket and desperate for something to work, you really have no other options. The doctor said that I have been struck with one of the worst diseases that can ever exist and I am also the worst case of that disease that exists too. He said that there really is no quick and easy fix and unfortunately… there are only these really radical and high-risk operations. So… the doctor will be most likely putting a machine in my brain in a way to help control the neurological disease and autonomic dysfunction after the pump. When I asked the doctor how soon after this operation of implanting the pump will the brain surgery be, he said that it “won’t be long after!” So he is not going to have me wait long, which was a big fear of mine because I really don’t have the time to wait.
Hopefully between the pump and hyperbaric oxygen, I will be able to be helped in terms of the neurological disease and autonomic dysfunction. I am really hoping. I am also hoping that it will do something for the severe Gastroparesis too, as it had something to do with it as well. But since this is really all considered ‘experimental,’ we really don’t know how this is all going to end up. I am really hoping I won’t need the brain surgery, but in realistic terms, I know that it is a real possibility. I just hope that I made the right decision by postponing HOPKINS. The doctors really wanted to get the pumps in me and everything, and they said that they really didn’t want to do it with the tubes too. So that means that it would have to occur before I went to HOPKINS or any other hospital that wanted to put tubes in me to feed me.
In addition, my gastroparesis is getting extremely worse. I only weigh in the 60s and I am having more difficulty in swallowing as time goes on. I am also becoming more bloated and distended and something really needs to be done. My BMI is basically off the chart and unheard of, as it is a miracle that I am still alive because it only is 10.8. Even the doctors have stated that they don’t know how I am still ‘alive’ with those numbers, but I just keep telling them that I must be doing something right. The doctors say that I really must be and that it is because of the great support I get from others. Of course if I didn’t have the support that I had, I would never be able to come this far. It is really from the support and encouragement of others that has gotten me over the big bumps in the road and has gotten me to be able to push forward. It is the support and encouragement that rejuvenates my batteries to continue fighting.
Well, since my gastroparesis is worsening and I also have the obstruction/twist in the colon, I really need something to be done in that area as well. Therefore, my doctors in California have contacted Georgetown and are awaiting to hear from them for an appointment. Ideally, California would be the best place to go to, but unfortunately, my head doctor is no longer there and as a result, they have stopped doing the transplants. Therefore, all they can do is the tubes and remove the obstruction. However, the doctors feel I am beyond that and the only real cure and answer is to receive a radical and risky multivisceral transplant that entails getting a new stomach, small and large intestine, pancreas, and liver. So since California no longer does it and Hopkins doesn’t do it… I am being sent to Georgetown because not only will I be able to get the tubes that they all can do, but Georgetown is also one of the six hospitals in the country that do this transplant.
After speaking to Georgetown, they want to get me into seeing them as soon as possible. There is a whole team of doctors to see and originally they wanted me to come September 3rd to see one doctor and then a later date to see other doctors on the transplant team. However, if I am having the surgery first on the 27th of August, I am no way going to be up to traveling (especially on a plane) by the 3rd. We don’t even know how long I will be in the hospital because everything is magnified for me. I will be in the ICU and in the hospital for at least a couple of days. In addition, the pain from the surgery will be much more magnified for me than for the average patient having this surgery because of the nature of my illness.
In addition, we really wanted to try to arrange all the appointments at the same time because we really don’t have the expenses to keep traveling back and forth. It is also extremely hard on me to travel as well. So, since we have to go all the way to Washington DC to go to this hospital, it would be better to have all the appointments set up at one time so that we will only have to make one trip down to see them. You know? So we are awaiting to hear from the transplant team when they can see me and we will work it out with them. As it is, it appears that it will be occurring in the latter part of September and early part of October. I just hope that I can make it that long because of everything that is occurring. I am really losing weight, my stomach is killing me, I am more bloated than ever, and my mucous smells like rotten eggs when it is expelled (the doctors says it is because I am fermenting). To think… this will be the first time ever that my dad is in Washington DC.
Well… I also just wanted to let you know that the month of August is known as Gastroparesis Awareness Month. According to the National Institutes of Health and the National Institute of Diabetes and Digestive and Kidney Diseases, gastroparesis is a disorder in which the stomach takes too long to empty its contents. Specifically, gastroparesis is the result of damage to the vagus nerve, which controls the movement of food through the digestive system. For persons afflicted with gastroparesis, food remains in the stomach instead of continuing through the digestive tract normally.
Gastric motility disorders have a huge impact on ones life in many aspects. The two motility disorders, which I have are Gastroparesis and chronic intestinal pseudo-obstruction. These conditions are not just inconveniences. They are disabling, and in some instances, can even be fatal. There are few treatment options available, and even those have complications and limited effectiveness. Little attention has been given to these illnesses for research due to lack of awareness of the need. Some people suffer only from gastroparesis, while others battle the intestinal pseudo-obstruction. However, it is not uncommon for people to develop both conditions in which case the entire GI tract does not function, making the already complicated conditions even harder to treat, which is the case with me. The impact that these conditions have on ones life can be profound depending on severity and response to treatment. Malnutrition and dehydration are common leading to the need for feeding tubes or IV nutrition in severe cases. The effects of chronic malnutrition create problems on other parts of ones body resulting in additional complications. Hospitalization is often frequent in order to enhance nutritional status or treat symptoms.
So I just wanted to bring awareness to these illnesses because this month is known for awareness for these illnesses. One of the most frustrating aspects of dealing with Digestive Tract Paralysis is the unpredictability of the condition(s). Each day may be filled with ups and downs and this makes it hard to plan or manage life. Although following a specific diet or treatment protocol can better control symptoms, often there is no explanation for a drastic change in symptoms from one moment to the next. They are poorly understood and often not believed by those not suffering. They are considered to be “silent illnesses,” a term which refers to the fact that it is not always apparent on the outside how sick one actually is. This may lead to comments from others stating “but you don’t look sick!” It is not uncommon for one to be accused of making them up or suffering from eating disorders.
Often patients are misdiagnosed for years and do not receive the proper treatment. In addition, lack of awareness inhibits the ability to seek funding for better research. Digestive Tract Paralysis is under-recognized, so therefore ignored by many medical companies, pharmaceutical companies, and the FDA. Drug approvals are slow, at best, and many drugs which have been effective are so easily pulled from the market due to unsubstantiated side effects in only a handful of people. That is why there aren’t really a lot of great options in helping me and why the options that are available are so expensive.
Well… I just wanted to share the latest news. I hope I didn’t bore you too much with all the info. I will let you know all the latest updates and such with all the upcoming surgeries and such, as well as the start of the hyperbaric oxygen because we are going to be hopefully starting that too. Hopefully with all of this stuff, I will be able to get some help and some relief.
Like I said also in the beginning of this blog, I am going to try to revamp my website and Facebook page to make it more ‘laughing’ and showing more of my ‘DYSFUNKTIONAL’ life and such because like I said before… laughter is the best medicine and with all that I am going through and such… we all can use it! Besides trying to raise funds for my treatments, which I desperately need in order to survive because we cannot afford them on our own, I am also trying to make a mark in the world. I am hoping through my website and Facebook page that people will learn that they can still move on with their lives even though they were given a huge setback and obstacle to go around. As Richard Nixon once said, “Never let your head hang down. Never give up and sit down and grieve. Find another way. And don’t pray when it rains if you don’t pray when the sun shines.”