Just wanted to inform you of the absolute latest that has been happening like usual. I don’t know how much I am going to be able to write tonight or how coherent it actually is going to be because I am not feeling well tonight. It is actually a ‘bad’ night tonight… then again what night isn’t lately? Things are just getting worse and worse. Yet, I am trying to hold on and hoping that things will get better despite all that is occurring.
It is another night awake and being spent alone while all the normal people in this world are fast asleep and enjoying themselves in ‘dream world!’ What I would simply do to be able to enjoy that aspect of life again. Yet, I have had that luxury taken away from me thanks to this wonderful disease and it has gotten even worse ever since the exacerbation of my illness. My illness has progressively been getting worse and especially since the accident that occurred this past May, my illness and disease has really taken off. Ever since May, I have taken a severe downturn and it is at the point that we don’t even know if I am going to make it through the night at times. It is just one thing after another and it is just suffering 24/7. If I thought it was bad before and I was suffering prior to the accident, it is even more horrendous and unbearable now. Then again what did I expect? This accident ended up spreading and exacerbating my illness and therefore, it is no wonder that I am so much worse.
My life has totally changed since the accident in May. My life has totally transformed because even though I have had this illness longer than that, I have had so many more complications and so much deteriorations since then. My body has really been shutting down since the accident and as a result, something really needs to be done and done quickly because if it isn’t… I am afraid that I am not going to make it much longer. Even my doctors are fearful for my life. Since the accident I have gotten worse in so many ways and even have lost weight… weight that I definitely could not have afforded to lose. I am basically now weighing in the 60s and even that isn’t really accurate. I most likely weigh less than that and weigh in the 50s because the truth is that I am loaded up with pounds of stool.
As a result of my illness, I suffer from severe gastroparesis. My whole entire GI system is basically ‘dead’ and there is absolutely no movement whatsoever throughout my GI track. I have no peristalsis or movement through my stomach, intestines, etc. and as a result, I am basically completely full and loaded with pounds of stool that cannot come out and resulting in producing added weight. Not only is this adding to the additional pain and discomfort that I am already feeling because of my illness, but it is also causing me not to want to eat as well because it is making me feel ‘fuller’ than usual. Not only can I not eat because of the severe gastroparesis and the trouble swallowing, but because of the fact that I feel so ‘full.’ They have tried numerous techniques to remove the stool like enemas, laxatives, enema bags, even NG tubes with the mixture that they give people to clean themselves out prior to getting a colonoscopy, but nothing has worked. In fact, even when I had the NG tube, they were only able to give me less than a ¼ of the mixture called GO LITELY and then it ended up backing up through the tube and the tube had to be removed. The only thing that will work and will have to be done will have to be surgery to remove the stool. But I am really nervous because not only is it surgery and surgery is dangerous in general, but surgery will also make my illness worse because any type of trauma to my body makes my illness worse and spreads it, which is definitely something that I can’t afford. In addition, I am scared because since I have all this added weight from this stool, I know that I will lose it when I have the surgery. As a result, I probably will end up weighing only in the 50s. That is definitely way too low and dangerous.
Things have really gotten horrendous since May and dangerous. Even though I only lost about 5 or so pounds since May, it really is a lot and extremely dangerous because that is definitely a lot of weight to lose when you are only weighing in the low 70s. When you weigh that little already, you cannot afford to lose absolutely anything. The doctors are really fearful because not only am I now at even a more dangerous level in weight, but my BMI is only a 10.8 and that is super dangerous. They are even quite surprised that I am even living at a BMI at that level. A healthy BMI (body mass index) is between 20 and 25 while a reading of less than 15 signals severe danger because the person is severely underweight. A BMI nearing 15 is usually used as an indicator for starvation and the health risks involved. The lowest BMI ever that was ever recorded and the person ended up dying was 9. So, you can imagine how scared he doctors are and so am I because I am not that far from it.
As I just also mentioned, my swallowing has also gotten worse since May too, which has also resulted in the weight loss. Even though I was so limited in what I could eat at that time, it has become even less now. I basically can nothing now because everything is giving me problems. The few things that I enjoyed can no longer happen and even drinking is giving me problems. I am basically living on egg whites and ice cream, but even that is with tremendous difficulty. I am having an awfully hard time taking anything… even the medicated ice pops that I need to take to raise my bloods. Whenever I need to drink anything, it is a real battle because I literally choke on everything and when I do manage to get it down, I automatically get severe pains and become distended. I get so distended that I look like I am 9 months pregnant and ready to give birth. The only chance I have of getting fluids down is to make them ‘slushies’ because I can’t drink them if they are pure liquids.
I am also getting severe pains whenever I eat. Like I said before I become distended as well when I eat or drink too. It really stinks because I am so thirsty and nothing quenches my thirst. I am even in a ‘catch-22’ because if I don’t drink I am dying of thirst and then I suffer in tremendous pain and agony when I do drink. I can never win.
To make matters worse, I am having so much difficulty even taking my medications. It literally takes me 10 minutes to get down my medications and the only hopes in getting them down is with something carbonated. I guess the ‘fizz’ or carbonation helps to push it down. However, I can’t afford to not take my meds because I need them to somewhat function and to look somewhat normal. I don’t even take a few medications either. I take over 50 pills daily and take pills for breakfast, lunch, and dinner. My snacks even consist of pills. So for me to have this much trouble with my pills, it is not a good thing.
Since I am doing so much worse especially now, I can’t take it any longer. As I told you in a previous blog, I have to wait until I come off certain medications in order to proceed with the intensive ketamine coma that I so desperately need. This is a different type of ketamine coma because as you already know I have had previous ketamine comas and have been on these medications in the past. This ketamine coma though is very different and much more intensive that I will be receiving in North Carolina. So in the meantime we also have to do something to ‘buy’ me time. Even though I did have the option of going to have another machine put in me even though I had one previously and it had failed me, I have decided to put that on hold and proceed to go to California because I desperately need surgeries on my GI tract because I can’t take it anymore.
However, we don’t even know if I will be able to come off the medications in the long run because I have a lot of comorbidities and these medications are being used to treat those issues as well. As a result, if I come off of these medications, it might make these issues worse such as the pain and therefore, it will be something that can’t happen. We have started to cut down on the medication already and I have been really suffering more already. Even though we only cut the dose 30 mg, I have been feeling a huge difference. So we don’t know if we will be able to continue to cut down the meds.
In addition, I will be going for another ketamine coma this week or the beginning of the following week. Even though I have been going for the ketamine comas in New York, it is no way in comparison to the ketamine I will be getting in North Carolina. I really need the ketamine that I receive every other week in New York especially now since the accident because we are hoping that the ketamine will help to alleviate some of the pain as well as hope to stop the progression of the disease that the accident has caused.
Since the accident did cause exacerbation of my illness, I am doing worse than ever and it has really made a great impact on my overall status. I have developed an obstruction or a colon twist and as a result, it needs urgent attention. We are unsure as of now if it is a colon twist or an actual obstruction, but once it is determined, I will need surgery immediately. We have been trying to hold out as long as possible because surgery isn’t the ‘easiest’ thing on me because of my overall medicals status and condition, but we really don’t have a choice.
We are not sure if it is an actual obstruction or a colon twist. We know that since I do have the severe gastroparesis and that my GI tract is ‘dead’ I have a lot of air and pressure being put onto my organs, which is shutting them down. As a result, the doctors have always told me that it is quite possible for my colon to ‘twist’ because of this air and pressure and if it did, it would be an immediate emergency because I could easily die from it. When I was at the Mayo Clinic, it was determined that there was this finding as well as matted small bowel loops and as a result, attention is needed. However, with me having this neurological disease that can worsen with surgery, the health status that I am in, and the fact that I have so much air in me, it really makes having surgery complicated and extremely dangerous. I am just hoping that it can be avoided to have a colostomy because I don’t think I can take it. With everything that has happened to me in the past and how I was robbed of so many things that people take for granted such as eating, walking, and been suffering so much of pain 24/7, etc. I don’t think I can handle a colostomy bag on top of everything else. Haven’t I done enough suffering? Shouldn’t I at least get a break and be able to avoid this? I am only hoping that it is an obstruction rather than a colon twist because I know that a colon twist is much more dangerous and will need much more immediate attention and surgery than the obstruction. So who knows if I will make it until we have planned the surgery if it is an actual colon twist? You Know?
I can’t do anything without doubling over in pain. Not only am I in severe pain throughout my entire body and suffer from an extreme tummy ache, but I have this deep ache in the pit of my abdomen above my belly button. It is basically right where the colon twist or obstruction is. Also, I can’t take eating and throwing up anymore. Every time I eat, I end up vomiting because I cannot keep down food. Even going to the bathroom is giving me problems, as I am suffering more than ever from Pelvic Floor Dysfunction, which refers to a wide range of issues that occur when muscles of the pelvic floor are weak, tight, or there is an impairment of the sacroiliac joint, lower back, coccyx, or hip joints. Tissues surrounding the pelvic organs may have increased or decreased sensitivity or irritation resulting in pelvic pain and it causes me to have extreme difficulty evacuating stool. Therefore, it adds to the reason why I am suffering from constipation and why I am always producing mucous.
The pains and discomfort from my stomach have gotten so bad that I can’t even sit at the dinner table anymore with my family. Even though I couldn’t eat dinner really with my family beforehand, I still sat with them so that I could still spend ‘family time’ with them and talk to them during dinnertime. However, I am so much in pain now from my disease that it makes it literally impossible. All I do is lay on the couch because all I can do is curl up in a ball like a cat especially when I eat because of the extreme pain and cry. While my family eats, all they hear is me crying in the other room because I am suffering from so much intense pain. They hear me crying in agony and pleading with someone to ‘please help me’ because I can’t take it anymore. It is absolutely excruciating. Even the little drink or food will cause me tremendous pain.
Something has to be done and done quickly because I can’t take the pain anymore. Plus, since I have to wait for the intensive ketamine infusion until I come off the medications, we have to do something to ‘buy’ time. As a result, we have come to the conclusion that we are going to head to California to take care of the GI issues. I will be receiving multiple surgeries and during this time I will also be getting ketamine because it will be used in hopes to keep the disease ‘at bay.’ Since surgery is known to spread and exacerbate the illness, ketamine will be used to hopefully contain it. Even though it won’t be the intensive ketamine coma that I need, hopefully the ketamine that I will be given for the surgeries will still be able to do something for my illnesses to help me besides just ‘containing it’ and not allowing it to spread further. Maybe it will help with the pain as well and do something that the intensive ketamine coma could have done.
So the plans are set and we are supposed to leave July 21st. I know it is still a month away, but that is the soonest that we can go. People think that it’s so easy to just go and have surgery when it’s needed. However, the types of surgeries I need can’t just be scheduled in a blink of an eye.
Even though the surgeries are scheduled a month away, it will take that long to get everything situated. First of all, I have to have the surgeries when the doctor is available. The only time the doctor is even available besides this upcoming week is during that time. Of course this upcoming week is too soon to get everything organized with everything else and therefore the only option is to have it on July 21st. Second of all, it isn’t like I am having one surgery. Since I will be having multiple surgeries, it will need plenty of scheduling and be time consuming. As a result, it is not something that can be scheduled overnight. So by the time each surgery is scheduled and approved, it will take some time. Even though I am sick and important, I am not the only sick person in the world. There are plenty of sick people in the world and as a result they need surgery too. Just like they had to wait their turn to have surgery, I have to wait my turn. I can’t just ‘cut’ the line because my name is Fallon and need to have surgery. You know?
Finally, I also have to find a way of raising funds because it will be extremely expensive. Not only do I have to factor in the cost that I have to travel across country to California from New York, I will also have to factor that cost that it will be multiple surgeries and therefore I will be in California for some time. As a result, hotel accommodations will have to be made, a car will have to be rented so my dad can get to and from the hospital, there will be the cost of living expenses, etc. We also have to factor in the cost that during this time my dad will be with me and not able to work. Therefore, we will not be having an income during this time and it would mean that our pile of bills couldn’t be paid. Even though my dad will be going with me for the surgeries, my mom will remain at home to try to hold down the house. Even though I would love for both my parents to be there with me especially since I am so very sick and could even die, we cannot afford for the entire family to be there. Someone has to stay home and take care of the business somewhat and try to pay the bills. However even though my mom will be home to answer the phones, there will be no work to go out and money will not be able to be made. Most people don’t want to wait either so we will probably be hit hard too by this.
Therefore, it is more imperative than ever because we will need help in raising money for this trip and my treatment. As you can see, this trip will be extremely expensive. We will also have to worry about the copayments of these surgeries, which will clearly add up quickly because each day in the hospital will be about $150 and it will cost us another $100 each time I need a scan, procedure, or surgery. Its just going to be one bill after another and therefore we are going to need all the help we can get because we already can’t afford my treatments. If you can please help in any way possible and can think of any way of how to fundraise or raise funds, please let us know. Every $1 makes a difference because it is one less $1 that we have to come up with.
I will be having multiple surgeries like I said. I am extremely nervous and really didn’t want to have them done in the past because it required getting ‘tubes,’ but for me to actually be counting down the days until we go and I get it… you know things are bad. I never wanted tubes because I always wanted to be somewhat ‘normal.’ I was always hoping that I would be able to be able to eat and such. After all, this disease has taken so much from me already and I didn’t want it to take that from me as well. Plus, I didn’t want to suffer from not eating either because I knew that I would then suffer from hunger pains then. Since I will be fed through tubes, I will no longer be putting food in my mouth and swallowing it. As a result, food will not register in my brain and I will no longer feel ‘satisfied’ even though technically I am being fed. In addition, the tubes will be bypassing the stomach and that will also contribute to not feeling satisfied. Between not eating it physically and not having the food in my stomach, I will not only feel not satisfied, but I will always feel hungry and I will get hunger pains. This was something that I didn’t want to face.
I also didn’t want to worry about never eating again because to me… meals are more than just making sure you eat enough calories for the day. I think that eating with others offers a sense community and togetherness with those eating with you. Even if I didn’t like anything on the menu, I still looked forward to the conversations and good times I knew I would have with my friends. It’s a time to catch up, tell stories, reminisce about past memories and form new ones. However, I didn’t want to get the tubes because it would mean that I would never eat again and therefore, I felt that my friends would not want to have me around when they went out to eat. I mean why would they want me to just ‘watch them’ eat since I couldn’t eat. I mean I couldn’t blame them because I probably would feel awkward eating in front of someone that couldn’t eat too.
But it has gotten to the point that there just isn’t any other way. Something has to be done. So I will be going to California and having multiple surgeries. It isn’t set in stone, but the upcoming surgeries most likely will be as follows: I will need to have surgery to have the stool removed, I will need to have surgery to put a ‘vent’ tube in me so that I can expel the gas buildup in me (every time I build up with gas and become distended, I will be able to open the tube and be able to release the gas instead of looking like I am 9 months pregnant and ready to give birth), I will need surgery to have a tube placed in my intestines to try to feed me (they are going to bypass my stomach and try to find a small viable portion of my intestines in the very end in hopes that they will be able to nourish me a bit and buy me time), I will be having surgery to have the obstruction/colon twist removed, and I will be having a central line placed (because we need a way to access me better because my veins are failing me and with me being so complicated and deteriorating, they need a very easy and accessible way of getting access into my veins immediately).
So everything is all scheduled with that. However, my osteonecrosis has also been worsening lately as well ever since the accident. Like I have previously stated, I have a severe bone disease that entails having the jawbone being exposed and is starved from a lack of blood. The bone actually is dead and the gums do not cover that area. It is caused because a decrease the bone’s ability to repair itself. In addition, the doctors are thinking that the infusion that I receive because of my overall bone situation (bones too weak and could result in a life threatening fracture) is contributing to it as well. It is like you do one thing to help one thing and it causes something else to happen. It is extremely painful and it is getting worse and spreading as each day passes. Something has to be done because this is also only extremely painful, but it is causing it to be hard to eat too.
However, even though I am scheduled to see my usual surgeon for the osteonecrosis on Thursday, I also have an appointment with a top surgeon who deals with this condition especially at New York University Medical Center on Monday. I am hoping that my doctor on Thursday will be able to do something and be able to help me more because at leas the takes my insurance plan. With this disease, there are barely any doctors that treat this condition and take my insurance. The doctor I am seeing on Monday is one of them that don’t take any insurance whatsoever. So even though he might be the best doctor for this condition, I don’t know how I am going to be able to pay for it. I have tried to contact my insurance company and tried to get them to cover me, but they refuse to do it. But unfortunately it is a real necessity to be treated and as a result, I will especially really need to see this doctor if my current surgeon (that I’m seeing Thursday) can’t help me. That is more reason why I am pleading and hoping that I will be able to raise money and why I need your help. I am really deteriorating that really need your help.
In addition, I have been having a harder time functioning since the accident. I am having a harder time with my memory, concentration, finding the right word when speaking, etc. I am also more irritable lately and having more trouble sleeping. The reason is because my disease causes changes in the Limbic System of the brain, which is the part that controls these things and since my disease has been worsening and making my body worse it is causing more problems in the Limbic System as well.
Since the accident, my sleep has gotten worse than ever and of course that is related to the illness as well. I am so hypersensitive and in pain that I can’t get comfortable to sleep. I can’t sleep with a blanket and basically I cannot even move or turn because the slightest touch of the mattress or blanket on me sends the most excruciating pain through me. Getting less sleep is definitely not beneficial because I do not reach REM sleep, which is the healing sleep our bodies need each day.
Oh guess what? I got back my bag that my dad left on the plane. It finally arrived with everything in it. I was kind of shocked though that they delivered the bag without putting it in a box or anything. They even left the bag on the porch unattended because no one was home when FEDEX dropped it off. I was so surprised because there was all that medication inside and Southwest knew about it prior to shipping it. They knew it wasn’t ‘everyday’ medication either but medication including Methadone, Morphine, injections, Narcotics, etc. Anyone could have went into the bag and took something out.
My other bear finally arrived. When my dad left the bag on the other plane, not only were my medical records and medications in the bag, but so was my bear that I took everywhere with me. I was really upset that I didn’t have him anymore because he was also the bear that I held onto when I wasn’t feeling well and made me feel better with my tummy when it hurt. As a result, my mom ended up buying me a new bear in the meantime. Whereas the original bear was named FALBEAR, my mom named the new bear FALBEAR2 and whereas the original was honey fur wearing a pink jumpsuit, this new bear is buttercream fur wearing a blue jumpsuit. He is really cute and now I let him join the bear family. Of course the original FALBEAR is still more special because not only is he the ‘original,’ but he has a special message engraved on his paw that my parents wrote to me that says ‘I love you.’
I haven’t really been able to do much lately. So I basically just spend my days isolated and with my animals. Thank goodness for my dog and cat. They are my life. I would love to be able to go to the beach, but since I am so hypersensitive, I cannot really be outside because the heat from the temperature and the sun literally burn me alive. Plus I suffer from severe autonomic dysfunction and as a result, when I end up getting hot, I can’t sweat to relieve the heat. As a result, I end up overheating and feeling like I have blisters all over me. It is the worst feeling. This disease has forced me to become isolated in my own house because I can’t do anything. My life totally revolves around this illness. Thankfully I have a shaded backyard and I always wait til it is kind of ‘cool’ out or that ‘perfect’ temperature so that I can go out. Of course I have to make sure that it isn’t windy or humid either because that affects me too. If all is a ‘go’ and I get to go out, I love to sit outside with my dog. He even has his own seat.
Well… I guess I better get going. I am going to go and try to read a bit. I am reading James Patterson’s newest novel called “12th of Never” and can’t wait for his latest book to be released on Tuesday. I can’t believe how many books he has written. He must be the author who has written the most books ever. I gotta keep myself busy because what else can I do when you can’t sleep like normal people?
Thank you for your continued support and encouragement. Please continue to spread the word of my website and bring attention to it because I need all the help that I can receive. Please continue to pray for me because prayers are very powerful and can do a lot of healing on their own. Until next time…