I know… it has been awhile since I last wrote, but I haven’t been doing well. I wanted though to write tonight and update you on all that is happening because so much has happened and is happening. We are getting ready to leave for Mexico, so you can imagine how hectic everything has been on top of everything else!
Like I said… We are getting ready to leave for Mexico, so we have really been trying to get everything organized. It is going to be a really big trip in more ways than you can possibly imagine. Not only are we having problems coming up with the funds to pay for the trip, but also we have to do so much to prepare for this trip. After all, traveling is definitely not easy on me. This isn’t even a “small” trip. We are basically traveling across the entire country and then compound that by having to travel internationally. It is going to be one exhausting trip. We first have to fly to Atlanta, Georgia and then we have a connection to go to Mexico.
We are only going to Mexico for about a week this time. We are going just to finalize everything with the doctor because we don’t have the funds right now to do the entire Ketamine coma. Ideally, I desperately need the Ketamine Coma as soon as possible because I am rapidly deteriorating and not going to make it much longer. My organs are really shutting down faster than you can imagine and the disease is taking over and spreading like a wildflower. Yet, no one is going to do this Coma for free and therefore, I need to come up with about $100,000. We cannot afford it on our own, and therefore, I desperately need as much help from others as possible because I will definitely not be able to receive this lifesaving treatment otherwise.
As we are only going down briefly this time to finalize everything with the doctor and get everything adjusted and such, we are hoping to actually undergo the Ketamine Coma March 1st. So that gives me about a month to come up with the funds. I really don’t have long that my body is going to last and since my body isn’t going to put up much longer with things (the doctors are even shocked I made it this long), we really need to undergo the Coma by March 1st.
So as you can see I desperately need to raise a lot of money by that date so that I will be able to undergo the Ketamine coma to save my life. I really don’t have a lot of ideas to raise funds, but if you have any ideas, I would greatly appreciate it if you let me know of any. I have already tried posting some flyers, but if you want to post some yourself, please let me know and I will give you some to post. I also have written to the media as well as to some congressmen. However, I really haven’t gotten anywhere because you know the saying… “It isn’t WHAT you know, it’s WHO you know and unfortunately I don’t know anyone.” However, I was fortunate that one congressman did happen to reach out to me named Dean Skelos. I received a very nice phone call saying that he wanted to help me, so we will see what happens. He told me that he wanted to get the newspapers involved such as the Herald and such, so hopefully that will work out. After all, any little bit helps!
In addition, I am going to be selling bracelets to raise money. The picture is not the picture of the actual bracelet I am selling. I would appreciate it if you would want to sell them on your own for me and forward me the money. If you are interested, please let me know. These bracelets are the “LIVESTRONG” bracelets that are custom-made to bring awareness to my illness and me. I am hoping that through these bracelets that I will not only raise the much-needed funds, but I will also raise awareness to this mysterious disease that very few people know about.
I really hope that I will be able to come up with the money so that I will be able to have this lifesaving Ketamine Coma in Mexico. It is very rare and radical, but it is basically my only option. The coma has only been done in less than 40 patients in Mexico already and I will be the first patient to actually undergo the Coma in this new hospital. Even though the doctor has done this Coma before, I am going to a different hospital than he has done the other patients at. However, this hospital is supposed to be just as superb. It is also in Monterrey, Mexico and it is called Hospital Cima Santa Engracia.
Everything is a “Go” for the Coma. I finally got the approval from the hospital in Mexico, as well as the government. Like I said before, all that is needed is the funds. I am heading down to Mexico on Sunday, January 26th so that I can meet with the doctor and the entire team and to finalize everything. After all, I am literally putting my life in their hands. They are essentially going to be shutting down my body and putting me all on machines.
This Coma is done to patients who have the most severe cases of RSD and who have tried everything—including blocks and hyperbaric chambers—for their pain. I have been all over the country and had every treatment imaginable from blocks to stimulators to hyperbaric chambers to ketamine infusions to sympathectomies to more. I have been on countless amounts of medications and have literally tried every medication that can possibly exist. Right now I am currently on enough medication that can probably kill a horse, as I am taking Methadone, Morphine, Dilaudid, Oxycontin, Ketamine, Nucynta, Bethanechol, Misoprostol, Colchicine, Macrobid, Vancocin, Azithromycin, Senokot, Colasce, Ducolax etc. I take over 50 pills daily and even take injections besides that. Besides being in tremendous pain 24/7, my organs are shutting down and I am dwindling in weight, as I only weigh in the 60s.
Leading my Mexican medical team is Fernando Cantu, MD, who was trained at the University of Texas. I never met a doctor who I feel more comfortable with. He is such a nice and caring doctor. He understands me, which is a HUGE plus because very few doctors do. He said, “I am the worst case in the world and only 2 other cases were very similar to mine!” However, knowing that he has seen those 2 other cases and they have gotten better through his Ketamine coma, it gives me great hopes that I will have the same results. In fact, I have been so fortunate that one of these patients named Jessica has been talking to me and letting me know firsthand what it was like and what to expect in Mexico. It is so great to be able to talk to her because it is so good to hear from a person who has experienced the exact same things that I am going through. I finally have someone that understands me. She is the one who was in the Ketamine video that I displayed to show what the Coma was all about.
Jessica has been so informative of what to expect. I had so many unanswered questions, and I am so glad that Jessica was able to help me through them. Not only did she tell me what to expect when I came out, as most patients lose their memory temporarily and experience hallucinations and such, but she told me about all the lines that were put in you. After all, you are kept alive during this time on machines because the coma literally shuts down your entire body. You are given so much ketamine that you are basically just living on machines. I will be getting between 500-1000 mg of ketamine an hour. I was so scared of the lines and all the tubes and such, but Jessica assured me that Dr. Cantu was extremely gentle and like no other doctor. She said that he does everything once you are asleep and you don’t feel anything because Dr. Cantu knows how painful everything is especially in us because of how hypersensitive we are already. She also told me that Dr. Cantu knows how we are petrified of doctors and what we associate doctors with because we have had such horrible experiences with many and therefore, he never wear a doctor’s outfit. She said that he always just wears a regular shirt so that we don’t have negative stigmas about him and associate him as just being “another” doctor.
I feel so fortunate that I am able to speak to this person because it is such a great comfort to know what lies ahead. We have such similar stories and it is so nice to hear that I am not “alone” in what I am feeling. She also has aspirations and is going to school to become a Physician Assistant. Since she has undergone the Coma and has gotten better, she has been able to resume her studies and life and is moving towards that goal. Therefore, we have it planned that after I get my Ketamine Coma, I will be able to follow the same path as she, and then we will both work side by side Dr. Cantu and help him treat this horrible disease in Mexico. But like she keeps telling me… “It is small steps, but huge advancements!”
I am really nervous about leaving on Sunday. It is going to be one BIG trip. I never was out of the country before. But everything is set up including the hotel and plane and everything else. Everyone in Mexico and even Jessica have been so kind and helpful in everything that needs to be done and have worked with us to make sure it all went smoothly especially since my dad and I have no clue in what we are doing and don’t speak Spanish. Jessica helped us get a great hotel and she gave me more insight into Dr. Cantu.
Dr. Cantu has also been wonderful and I feel so blessed to have him as my physician. Not only does he talk to me anytime of the day and night because I have his cell number, but he actually treats us like family. He wants to make sure that everything is taken care of and that I receive the treatment that I need. In fact, he even said to us that he wants us to call him when I arrive at the hotel because he wants to come over to visit. Can you imagine a doctor coming to the hotel on a Sunday just to visit? I think that is incredibly sweet and nice of him. He is also scheduling a whole tour of the hospital and surroundings while I am down there so I can get adjusted to everything and meet the entire team.
So… I will be heading down on Sunday. We have our passports and tickets. The doctor would have liked to do the Coma now, but like I said before, I don’t have the funds right now to pay for it. So, we are hoping to do the coma March 1st. So if you can please help me raise the funds by buying/selling bracelets, spreading word of my website for donations, or even doing another form of fundraising… I would extremely appreciate it. Money is tighter than ever, as we can’t even pay our household bills anymore. All the money went to pay for this trip on Sunday and we are basically up over our heads in bills. I never thought I would see the day when I would say that the weeks that we can afford food in our house and for my mom to go food shopping that I feel “lucky!” We have been having a horrible time paying our bills including our mortgage. I swear… if we lost the house because of me, I would never forgive myself. My family has given up and lost out on so much because of me. I don’t want them to lose the house too. After all… the house is basically all they have left. I rather not get the treatment that I need than to have my family suffer more!
Besides getting ready for Mexico, I had another ketamine infusion/coma yesterday. However, I also found out from this ketamine infusion/coma that the disease has continued to spread and takeover, as it is moving closer to my brain and went into my jaw and mouth now. We already knew that I just didn’t have this disease in my body, but it was visceral. However, now we know also that it is in my jaw and mouth too.
It just so happened that I had more dead bone removed this week as well. I have severe osteonecrosis in my mouth and jaw and therefore, I had to have more of the dead bone removed. However, it ended up spreading and flaring up my disease. After I had the bone removal, I couldn’t even open or close my jaw. I couldn’t even bite down on anything because it would cause the most excruciating pain. Even just drinking or air blowing past it would cause so much pain. Yet, I thought that the pain was related to having the bone removed and I was going to go back to the surgeon to see what could be done.
However, I ended up going for the ketamine infusion instead because I also needed to get my medications since I was leaving for Mexico. It just so happened though that after I underwent the Ketamine Coma, the pain that once existed in my mouth and jaw and was so excruciating was gone. I could open and close my mouth, I could bite, and the air didn’t hurt as much. Therefore, since I had a reaction to the ketamine, it showed that it wasn’t the pain from the removing of the bone that I was having before but it was actually that the disease had spread and flared up. When I told Dr. Cantu about this today, he sad that the disease had spread, but he was glad that the ketamine did make a difference because it showed great promise that since I responded to the ketamine during the infusion, I would have a great response to the ketamine when I underwent the huge Ketamine Coma in Mexico.
So… that appears all that is happening. Like I said before, I am getting ready for Mexico. I am definitely going to miss my mom and pets. We are trying to find all different ways of communicating with her since she will be home in the USA and we will be in Mexico. We know the phone will be expensive because it is international calling. So we found out some Wi-Fi programs that let us call for free. Thank goodness for iPhones because not only will it enable us to see my mom because of FaceTime, but it will also allow us to communicate and get along while we are in Mexico as well because we downloaded translating programs. This way we will be able to find out how to say certain things and find out what certain things mean. I just hope that the TV is in English even though we are in Mexico. I think I am going to download some movies onto my iPad or something just in case because I don’t want to be stuck with nothing to watch because I don’t really know Spanish.
Like I said before… I am really nervous and excited about going. At least I know that I am coming home this time. I just hope that I will be able to return before it is too late. Like I said in the beginning of this… If you are interested in buying or selling the bracelets, please let me know. My email is at Femirsky@gmail.com. Any help that you can do would be much appreciated.
Thanks again for all your continued support. I will let you know more when I know more!