Guess if another blog is being posted it only means one thing… there is news to be said. I also wanted to update you to let you know the latest because I am leaving tomorrow. Yup… another trip. We are headed to North Carolina and hoping to hear some good news. I could really use it because things are getting horrendous. I don’t honestly know how much I can hang on.
To tell you the absolute truth… something really needs to be done and done quickly. I know I have been saying this for a while, but I can honestly say that I can actually feel the ‘pressure’ more than ever for something to be done quickly because my body just feels like it wants to ‘give out.’ I have been able to hold on for so long and I have been able to go on despite hearing how badly I am doing and despite all the deteriorating that has been happening, but I have to admit that I am getting to the point that I am just giving up. I hurt so very badly and I am so very weak. My little body just can’t take it anymore. It has gotten to the point to be honest that sometimes instead of wondering if I am going to make it to morning, I actually plead to ‘please take me already’ because I am suffering so much already.
The suffering is so intense. I don’t get a moments rest and I guess after suffering for so long and never getting a break, it is no wonder that I am at my breaking point. There is only so much a person can take. However, my body isn’t as strong as it once was. Whereas I was deteriorating before, I was still ‘strong’ enough to overcome all that I was going through and pull through it all. However, I fear that this isn’t the case anymore. I am just getting so weak and tired that it is even just a big deal to open my eyes and get out of bed.
I honestly don’t know how much my body can take. The pain and suffering is getting worse and so is the weakness. I am getting so very nauseous even more than ever that it is making it literally impossible to eat. Even swallowing is becoming impossible. The very few things I used to eat and drink have become a big ordeal to take in because the disease is really affecting my swallowing mechanism and digestive tract. The few things that I used to eat and drink like egg whites, ices, etc. are all too hard to swallow now and get down. I can’t even get down regular fluids. It is also getting impossible to take my medicine, which is not a good thing considering I take medicine for breakfast, lunch, and dinner, as well as snacks. I basically take over 50 pills a day and need to take them in order to even somewhat make it through the day. Yet it is getting harder and harder to swallow.
In addition, I have a severe obstruction that really needs to be taken care of. We aren’t sure if the obstruction is just a plain obstruction or if it is a twist of the colon. The doctors were always fearful that the colon was going to twist because of all the air buildup in my body, but something has definitely occurred. We knew that there was so much air built up in my body that it was exerting a lot of pressure on all my organs and causing them to fail, so the doctors were always afraid it was going to cause the colon to twist, which would of course lead to a huge emergency.
Yet, the doctors are hesitant to do anything. So many things need to be done and if they start operating on one thing, it is going to set off a whole domino theory. Therefore, I need to have everything in place and have everything done in a certain order. So it isn’t like I can just have this obstruction taken care of just like that. I can’t even have the doctors in the area taken care of it because I need specialists since I am so very complicated. Not many doctors will even ‘touch’ me because of my medical history and how much I am medical risk and as a result, I will have to travel to California or Mayo or to Hopkins to have this surgery performed. Of course everything costs money as well including traveling expenses, which unfortunately we don’t have.
I am also at the point where I can barely even go to the bathroom. Between my GI tract shutting down and me weakening and deteriorating, I just don’t have the ability to really go to the bathroom. It just takes so much out of me to even go to the bathroom and it results a lot of times in me ‘blacking out.’ It is really uncomfortable and scary.
In addition, the osteonecrosis has also gotten a lot worse as well. My bones in my mouth are protruding worse than ever in my mouth because they are ‘dying’ off. I am also getting more lesions occurring spontaneously, which is also exposing the bone. Not only are these lesions and bone appearing though, but they are also extremely painful, which makes eating and drinking even more difficult.
I was supposed to see the surgeon for the osteonecrosis in July, but since I have gotten severely worse, the surgeon has made the appointment for this Thursday instead. Hopefully something will be done because it is really causing a lot of problems and if it isn’t treated, it will only worsen. In addition, I am having the problem that all the surgeons that can treat this rare condition do not take my health insurance. Like that is a surprise, right? I spend so much on health insurance and yet when I need it, it is never any good. Anyway, I really need to find a way of raising funds because I desperately need surgery and to see the surgeon to take care of this immediately. I have spoke to my other doctors and they said that this must be taken care of immediately because unfortunately, there is no clear proof showing the best way to treat osteonecrosis, but starting treatment early—before collapse of bone—is best. It also needs to be treated because having dead bone in your body of course is never any good. Yet, like I said… it all depends on the funds I raise because no one is going to do it for ‘free’ and unfortunately our hands are tied for money. We don’t even have money to pay for my other treatment, how are we going to now pay for this? It just keeps adding up.
We also have to make up our mind what to do about the rest of my body. The doctors are unsure what to do because I need a bone infusion that I get every year because my bones are so very weak. I literally can have a life-threatening fracture at any time and as a result, I have been getting bone infusions on a yearly basis for the past 4 years. However, the doctors are thinking that these bisphosphonate infusions could partially be responsible for causing the osteonecrosis and as a result, they are hesitant to give it to me again. They have been giving me the bisphosphonates because Bisphosphonates have been widely used in the management of my osteoporosis and metabolic bone disease. They have proven to be effective in reducing the risk of fracture and have recently been shown to improve mortality. However, I desperately need it as well because without it, my other bones in the body will further deteriorate and I will be so prone to getting fractures. As it is already… my bones have been deteriorating and are so very weak with the infusions. Without the infusions, they would literally collapse. So we really need to make some decisions as to what to do. I have an appointment to discuss the infusion in the middle of July.
I have also been thinking and I realized how badly I want to get well. I never wanted to get well so bad. Not only do I want to get out of all my pain and suffering because I can’t take it much longer, but I hate watching this disease rob everything from me. I hate watching everything that I had such as the ability to walk, eat, even how well my brain function, etc. be taken away. So many things that people take for granted and that they never in their life think that they would lose has been taken from me.
I don’t even look normal anymore. On the outside, my feet, legs, hands and arms turn a rainbow of colors. The longer my legs are hanging off the edge of a chair, or just standing up, the darker the color gets. My skin is very thin and it is very easy to drawn blood from it because of the thinness of it. I also have extremely dry skin that used to be “as soft as a baby.”
Sensitivity is the worst that nothing can touch me… even the lightest touch. I can’t even enjoy the hugs from people because of how sensitive I am. Not only do I hurt if I someone even touches me, but even if someone is warm and comes near me, I am so hypersensitive that I can feel the warmth radiating from their body. If you think that is bad… bumping against a table or wall wouldn’t hurt a “normal” person, but it can bring tears to my eyes, doubling me over in pain. It just always feels like my bones have just snapped in half or been crushed.
I can feel the weather changing. Muscles and bones ache down deep, pain as usual, along with a burning deep in the bone marrow that nothing puts out. I don’t even get to go outside, as I have become a human weather station. I can feel the slightest change in temperature, humidity, etc. and the most gentlest breeze, rain, snow, etc. greatly affects me and causes me great harm. I am tired of sitting back and feeling isolated. I am tired of sitting back and watching everyone live their life and I am going in the opposite direction. It just isn’t fair anymore.
I keep wondering what I did to deserve this? I would do anything to get well at this point. It isn’t fair what I put my family through, as they have become prisoners of this illness as well. They may not be feeling this illness physically like I do, but they are going through it emotionally. They have given up so much for me such as money, going out to eat, going on vacations, etc. I can’t even remember the last time we did such a thing. What I would do to be able to live my life!!
I want to get well so badly. Not only do I want to get well so badly so I can become a doctor and help others in need and live out my dreams, but I want to be able to have a husband, kids, and a family. I also want to give back to my family their lives because they certainly don’t deserve to be going through this. Thank goodness I have my animals. If I didn’t have my dog, cat, and turtle… I probably wouldn’t have anyone. You really learn who your true friends and family are when you become ill.
I have also been doing a lot of thinking because I have to make a decision where I am going to have surgery done. Both the Mayo Clinic and the Stanford Hospital in California want to perform surgery on me. Unfortunately, I cannot receive any treatment in the local area because of my complicated condition and it takes going to these top hospitals in the nation to get help, which costs even more money on our part because we have to not only factor in the medical costs but also the traveling expenses. But it is a necessity that we go to these hospitals because they are the best in the country and the only hospitals with the knowledge of my illnesses. They are also the only ones willing to touch me. You can’t imagine how many times I have been to a doctor and besides them not knowing what to do, they don’t even want to touch me because I am a ‘liability’ or I am too difficult of a case.
Thankfully I have doctors at the Mayo Clinic and the Stanford hospital willing and able to take on my case. Even though we don’t know if it will necessarily ‘help,’ at least it is a possibility that there can be some hope that I can get better and get some kind of treatment to help me live. But of course I needed to decide which hospital to have the surgery at because both hospitals had their pros and cons.
I have spent a serious amount of time thinking where to have the surgeries performed and I think I decided to have it done in California despite the fact that it is further away from home and probably would be a bit more expensive. I really think that I would get the better care at that hospital. I am not 100% sure that I am going to have the surgery there and not at the Mayo Clinic, but that is where I am leaning towards. I will know for certain after this weekend when we find out what is happening in North Carolina.
Although it will be a little more expensive in California than at the Mayo Clinic because of various expenses such as the hotel being a little bit more costly, having to rent out a car because there is no way to get to and from the hospital in California without one (at the Mayo everything is connected by tunnels or by a shuttle system), etc., I really think I will get better treatment there. I feel more comfortable there and I think I need to go where I am more comfortable. After speaking to my dad, he also feels the same way. So I am glad I am not the only person having these feelings. After meeting with both doctors and hearing what both have to offer me, I feel like the doctors in California are more capable and have better bedside manners than the doctors at the Mayo Clinic.
It is important to go to a hospital where you feel like you get the best care from doctors, and I feel that would probably be in California. In the past, whenever I called a doctor in California with a question, I had my actual doctor call me back. However, when I call the Mayo Clinic, I never hear from the actual doctor even though I ask for him/her to call me back. Instead, I always get a nurse or someone else. I also feel like California is trying to treat the overall condition and trying to help the overall picture to get me well. On the other hand, Mayo is just kinda concerned with putting weight on me. The doctors at the Mayo Clinic kinda flipped out over my weight and BMI being 10.8, as they never saw someone so sickly and weighing so little. No matter what other problems that I may have, they kinda were pushing them on the back burner and just focusing on raising the number. They are just concerned with raising the number at whatever cost. Yet, they don’t realize that it isn’t that simple.
It is the doctors at California who I think better understand the overall picture. They understand that it isn’t so easy to just ‘raise’ the number. If left up to Mayo… I think they would just put tubes in me everywhere to just to raise the number. They would do whatever it takes to do it even if it sets off my other diseases such as my Reflex Sympathetic Dystrophy and/or autonomic dysfunction, which it probably would do so because anything traumatic or foreign in me will do. After all, Mayo even said they will put one tube in after another and if all fails then they will do everything through a central line and such. They don’t realize the price that I am going to have to pay for all these tubes and surgeries.
On the other hand, California actually understands that you can’t just put tubes in me without starting off my other illnesses. They understand that they have to weigh each thought before proceeding because nothing comes without risks. Even though they too want to raise the number and get me to gain weight, they will not do it if it is going to make me worse. I think that the doctors in Cali will ‘think’ more before they act, which is something that is a necessity with my illness. After all, one bad move and it could really cost me my life easily. In addition, they don’t realize that setting off the disease in one area of the body can easily set off the disease all throughout my body. For example, spasms are worst in my left leg, but the right leg will jump in on the action if the other one gets going.
I also love my GI team in California. There is no other doctor who is better than Dr. Winter. He is from South Africa and he is one amazing doctor. I really think that if anyone can get me well, it is him. When I am with him, I really feel like we are all part of a ‘team’ in trying to beat this illness. At the Mayo… I didn’t get that “all for one” feeling nor did I feel like I was part of it. I felt more like a patient with no say at the Mayo than someone part of a ‘team’ like at Cali. After all, with my illness, I need to be listened to because if they don’t and end up doing something to ‘hurt’ me, it can result in a horrific outcome.
I also decided to go with California because the Mayo Clinic said that even though they might be able to help me while I am there, they don’t know if they really had a ‘long-term’ solution. They felt that I would really need the radical multivisceral organ transplant, which entails getting a new stomach, liver, small and large intestine, and pancreas, which of course they don’t. At least if I went to California, I feel like they are working in getting a ‘overall’ solution and a ‘long-term’ solution even if it ends up being the transplant. This hospital in California is one of the 6 hospitals in the country that does this rare, radical, and risky surgery. So at least I will be in good hands.
But I don’t know the exact date of the surgery in California until we finish up in North Carolina. Even though I know how desperately I need the surgery in California, I am not sure if it is going to occur before or after I go for the huge ketamine coma in North Carolina. In California, they will be planning to basically ‘unload’ me since I am all loaded up on stool. My GI tract is all shut down and as a result I am basically all loaded up with stool (I have pounds and pounds of stool and basically the little weight I am is a ‘false’ weight because it is made up of all this stool. I am terrified to actually know my REAL weight because I already weigh in the 60s). I will also be getting a tube into my intestines to try to feed and ‘buy’ me time. Even though my intestines are paralyzed, they are going to try to find a viable portion… even if it is the tiniest piece so that they could get some food into me. They are also planning on possibly putting a vent in me because I build up with gas and become distended since it can’t move. When I have the ‘vent’ I will be able to open it up and let the gas out instead of walking around looking like I am 9 months pregnant and ready give birth. They are also thinking of putting in a central line because since I am getting so very sick, they want to have a way to access me better in case of an emergency. It will also be better than sticking me because my veins are starting to fail. Finally, the doctors in California will also deal with this ‘obstruction’ that is happening. I am only praying it doesn’t result in a colostomy. I don’t know how I am going to manage if I had to get one. It is like they are trying to make me the bionic woman. I am just going to have artificial means in me everywhere. It is like I am not going to be human! Hopefully it won’t come down to all this. But we won’t know all the details until we get there. Perhaps some of this stuff won’t even have to be thought of or have to be an option because the ketamine coma will ‘reverse’ or ‘fix’ some of this stuff if I happen to undergo the coma beforehand.
Speaking of the ketamine coma… I am off tomorrow for North Carolina. Even though I won’t be getting the ketamine during this trip, we are going to be finalizing everything and going over all the details so that we can do it. After all, receiving this treatment of going to have a ketamine coma isn’t a ‘everyday procedure’ nor does it come without risks. Therefore, the doctor wants to make sure that all the t’s are crossed and the I’s are dotted before anything. We have to all be on the same page before anything. The doctor doesn’t want to be in for any surprises.
Ketamine has a strong ability to block NMDA receptors. The hypothesis is that ketamine blocks NMDA receptors that might reboot aberrant brain activity. It is believed that prolonged infusion of Ketamine appears to maintain a level of Ketamine in the central nervous system long enough to reverse the effects of the sensitization process and associated pain. Even though I have been undergoing ketamine in New York every other week, I have only been having it for the day and not nearly at a dose needed to do this. In order for ketamine to reverse or help me, I would need to have a much larger dose and for an extended amount of time. As a result, we are head to North Carolina to have it done.
So dad and I are going to spend Father’s Day going to North Carolina. It certainly is going to be an experience. Not only are we taking a commercial flight, but in order to get to our final destination, we need to take a private plane. I have never been on a private plane before and either has my dad. It is much different than going on a commercial flight because on a private plane there is a weight requirement and such. I told my dad that he better not gain any weight because the plane will never go up. I must say though that I am really excited to go on this plane. I will definitely be taking pictures.
Since we won’t be home for Father’s Day, we are going to be celebrating Father’s Day today. I bought him a special cake from Carvel. One thing about my dad and me is that we love our ice cream. Every night we have our dessert together and we can’t go to sleep without having our ice cream. We can miss dinner and not eat other things… but ice cream is a MUST. As a result, I got him a nice ice-cream cake. I didn’t get him the traditional Father’s Day cake though because it was too big and since we weren’t going to be around I figured that it wasn’t worth it. After all, the traditional Father’s Day cake was shaped in a whale and I thought it was no big deal to get him a smaller cake that would have no leftovers. Big whoop if it was a square cake instead of a whale, right? I did make sure though that the cake was covered in hot fudge. I don’t think we ever had a cake with the entire cover of the cake being covered in hot fudge. We will see how much he likes it tonight. He just better not eat a lot because we have to fly tomorrow and like I said… there is that weight requirement. LOL.
I didn’t really know what to get my dad for this special day. So I figured that since we will be going away a lot to hospitals, the best thing that I can give him are new shirts. He really didn’t have any and he normally doesn’t buy himself anything. So I figured I would help him out and buy it for him. I also bought him a Bluetooth adapter for his cellphone for his car. I bought it for him so that he wouldn’t get a ticket since it is illegal to drive with your phone in your hands and unfortunately my dad has an old car that doesn’t have Bluetooth installed in the car already. Since I am always on the phone with him anyway, I didn’t want him to risk getting a ticket. So I bought him the Bluetooth so he could talk and not worry.
I have the absolute best dad in the world. Even though we really won’t get to celebrate Father’s Day how we always do with a day of R & R for dad and him barbequing, at least I will get to spend the day with him. Even though I hate to travel and it really exhausts and takes a lot out of me, I do have to say that I love being with my dad and I treasure every moment I am with him. My dad is not only my dad, but he is my hero, my knight and shining armor, and my best friend. I definitely would not be here if it wasn’t for him. He is the one who keeps me going.
Wanna hear something funny? Things always happen when you can’t afford for them to happen because there is no time for it. Well, my makeup ended up falling behind my furniture today because it fell out of my hands. I live for my makeup because I hate looking so ‘sickly.’ At least with makeup, I have learned to look my best and to conceal how ill I really look. The cosmetologists have showed me how to hide all the ‘bad’ and how to look my best because when you look good… you feel good. Plus, I don’t want people to see how ‘sick’ I really am. So when I lost my makeup behind my furniture, I literally freaked because I knew that it was gone because there was no way of getting it. I have the type of furniture that goes around my entire room and one piece is connected to the next piece and all pieces are not only screwed together, but they are screwed to the wall. My dad knew how much I wanted the makeup, so he volunteered to take apart my furniture. I was like “no way! I will just buy new.” Thank goodness my dad took me to buy new today so I would have it for my trip because if my dad ended up taking apart my furniture just for that makeup, I probably would have to end up getting new furniture too in the end. To take apart all that furniture just for makeup… it was ludicrous.
Well… I guess I better get going. I just wanted to update you and let you also know that we are leaving tomorrow for North Carolina. Of course I will update you again when I know more and especially after I get all my info when I meet with the doc on Monday.
Thanks again for continuing to support me. Like always, I really need your help because I need lots of upcoming treatment and it doesn’t come “free!” Donations are much needed and so are prayers, so please spread the word and bring attention to my website so that I can hopefully overcome my illnesses and become the doctor that I have the ambition to be so that I can help others. Any help that you can do will be much appreciated!! I don’t wanna die!!