Just wanted to give the latest update since it is another sleepless night. Feeling so ill and figured that instead of just sitting here suffering in pain, I would be somewhat productive and give the latest update on what is happening. Also thought that maybe by doing this that it would help take some of the suffering and pain away because it will keep me busy and my mind occupied. If nothing else, it will help me pass the time until morning. Thank goodness that I have ketamine in the morning because I have been suffering so much lately.
I have been having the worst pains in my stomach lately. I never thought that it could get this bad. Even though I constantly used to suffer with stomach pains, I used to get a pain that was debilitating and wiped me out maybe once a day or every other day. However, it is now occurring that I get this pain about 4-5 times a day now and it is absolutely unbearable and intolerable. It literally wipes me out.
Something definitely needs to be done and done fast because my entire digestive system is acting up. I get these debilitating pains 4-5 times a day, which occur over the course of 2 hours each. It is almost like having contractions when you are pregnant and ready to give birth because I can literally feel them coming because they start out subtle and then they build and build until you can’t take it anymore and all you can do is literally lay there in the fetal position and scream and cry because of how bad the pain is… while my entire body breaks out in chills because of the triggering of the autonomic dysfunction. This pain lasts for about 2 hours and just as it builds like a contraction, it also peaks and then it dissipates.
The doctors think that the reason that I am breaking into the chills so much lately is because of the autonomic dysfunction and the fact that my body can’t handle processing more than one sensation or an extreme sensation at a time. Therefore, when I become in pain, I break into the chills. As soon as the pain disappears, the chills stop too.
The pain is just so excruciating at all times and besides that… I have been extremely nauseous and vomiting like crazy. I can’t even go to the bathroom without vomiting. It is so weird because anything that basically puts pressure in the abdomen (i.e. going to the bathroom)… it makes me vomit. I just can’t take it anymore.
I can’t even eat or drink anything anymore without having mega problems with my stomach and the vomiting. Even the very few things that I was able to get down before…even my favorite things to eat like ice cream or a simple thing like egg whites have become impossible to get down. I can’t even stomach getting my pills in me anymore, which is a nightmare because it isn’t like I take only a few pills. I take like 20 pills at a time. I have no choice but to take these pills too because I can’t live without them. After all, it is these pills that are supposed to be keeping me ‘alive’ and keeping me going!!
I am supposed to be leaving November 30th for Cleveland Clinic. That day can’t come soon enough. We are supposed to be going to Ohio to see the surgeon because I am still in need of the multivisceral transplant which entails getting a new small and large intestine, stomach, liver, and pancreas. It is a major surgery that is extremely dangerous and in fact it is the most dangerous of all transplants. Not many hospitals perform it, as Cleveland Clinic is only one of the six that do it.
However, since it is so dangerous, I need to be as strong as possible in order to be able to survive it. Therefore, since I am so very weak, they are hoping to take out the colon first and hopefully the small intestines won’t be as bad as they are thinking and therefore it will allow us to buy some time to allow me to get stronger for the transplant. We won’t really know for a fact how badly the small intestines are until they remove the large intestines, but the goal is to just basically live on the small intestines for awhile and get me stronger for the transplant.
This was the surgery that was supposed to occur months ago. However, it had to be canceled because of the accident that occurred when I broke my hip, femur, and pelvis and became the bionic woman. I had to have mega surgery and I am still recovering from it. I had to basically relearn how to walk all over again because they had to put a rod though my femur and put plates and screws and nails into my bones as well. This was the worst surgery I have ever had and a surgery I dread ever having again. It was unbearable the recovery from it has been incredibly hard. Thank goodness I have Scooby because he has made the biggest difference and he is the reason I have made it as far as I have.
My mom and others say that I wouldn’t have recovered and made it this long and far if it wasn’t for Scooby. They are probably right when they say that. He has been an amazing dog and best friend to me. When he stayed the entire 2 weeks in the hospital with me, it really made a huge difference in my recovery. I can’t tell you how much the pain changed when I came out of the operating room and they put him on my bed in the recovery room. Scooby was actually the first dog ever in the OR and the recovery room. He is my little buddy and he has been taking such great care of me. You know the song “Mary Had a Little Lamb?” Well… that is the story of Scooby and me! Wherever I am… Scooby is sure to follow!
Scooby has been going through this entire recovery process with me. He goes with me everywhere… whether it is to a doctor, to the hospital to get my colon emptied, or even to Physical Therapy. The PTs even say that he is the mascot there. He is really adorable there because he sits right with me and helps me work out. He is such a smart and well-behaved dog… especially for a dog that is only 7 months old.
In fact, Scooby will be making his first plane ride when we go to Ohio… if we go. He is coming with us to Cleveland so I am really excited that I am going to be able to take him with me. I love him so much and I am so glad that I have him. There is nothing that I wouldn’t do for him. However, even though I love Scooby with all my heart and such… I have been looking for someone to take him. Sometimes I wonder if I am being ‘fair’ to him because of how sick I am. In addition, I also know that I may not make it much longer and I want to know that he has someone that would take him and he would have a good home to go to.
I really need to get to Cleveland because my disease is spreading and I desperately need my colon removed. However, even though it is booked and scheduled, it is all contingent on whether we have the funds or not.
When I fell and broke my hip/pelvis/femur in August… our finances really got hit hard. We were really struggling back then, but we are struggling even more now. When you have your health, you have everything. Due to the accident, we had to pay for so many things in order to help get me well. Between the equipment, doctor bills, and even the nursing aide bills… we literally went through everything. After all, I couldn’t remain alone at home and we needed to have a private nurse, which was very expensive among other things. So… all the money that was hopefully put aside for this operation had to be spent on the operation for my hip/femur/pelvis and for the recovery process.
So…. I am really desperate for help from others. I need donations more than ever because it has gotten literally impossible to pay for medical treatment. We are struggling so much and I can’t tell you how appreciative even a dollar is at this point because it is one less dollar that we have to come up with. My disease is really getting worse and I am like a time bomb that has been detonated and getting ready to explode.
Not only do I need to get this surgery done in Cleveland though, but I also need to get to Mexico so that I can have that ketamine coma that will potentially ‘cure’ me. IT is the only treatment out there that will cure my entire illness. However, it costs over $100,000 and of course we can’t afford it. Even though I have been getting ketamine here in the USA, Ketamine is considered a schedule 3 drug in the U.S., and as a result, only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. I have already met with the doctors down there and they said that I am the worst case that they have seen and had said how desperate I need this treatment.
This ketamine coma is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness. This coma is risky, but I am willing to do all this and everything at a chance for a normal life.
That is why I am begging for donations. I really want to live. There is so much that I want to do and have not done. I have been robbed of life and I want it back. Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire!! Imagine having your body totally out of control and on autopilot all the time. Imagine having continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis. Imagine having no social life and your whole world being turned upside down with everyone walking out on you!! I try to smile and make it seem like it isn’t so bad, but living my life is like living in Hell.
I want my life back and I am really running out of time. The holidays are coming up and it would be a real miracle and great holiday present if I were able to get the necessary treatment that I need to save my life. I can’t remember the last time we celebrated a holiday because of how strapped we are financially. But if I got better, I would not be a burden to my family anymore and I would be able to become the doctor that I always dreamed of becoming so that I could make a difference in the world. We desperately need help paying for my medical treatment because not only can’t we afford the big trips to Ohio (which is quickly approaching and is scheduled for November 30th) and Mexico, but we also can’t even afford my daily meds or the treatments that I receive at home. Even when the insurance does pay, we still have copayments to also pay which quickly add up as well.
Therefore, if you can please spread this link for donations I would really appreciate it. There is no donation that is too small, and all donations are appreciative. Donations can be sent to www.gofundme.com/help4Fallon. If you have any fundraising ideas, please email and let me know at Femirsky@gmail.com.
Well… I guess I will be going because I have ketamine in the morning. Thanks again for all your continuing support.