I just wanted to write and let you know that I am home from our trip to North Carolina, but I wanted to also write and let you know all that has happened since I have written the other day. Our trip home has certainly been an experience like always, and much has happened since. I have also come to some conclusions and I also might be headed back to the hospital today or tomorrow, so I wanted to alert you to that as well.
First, I guess I should tell you that I am not doing well. I don’t know if it has to do with the trip, but I am not doing well at all. It is very possible that I can end up in the hospital tonight or tomorrow, but I am hoping it won’t end up that way. I have had this before when we went away and luckily it had passed, but this time is absolutely the worse. I never had it this bad when we traveled and therefore I am scared that it won’t pass and it is finally time to go to the hospital. I am scared that it is definitely something to worry about this time, as I am scared with what I am feeling that something drastic is going on and I am at the point where I am beyond the point that I can be ‘helped’ or bounce back on my own.
I don’t know if it is because my bloods have fallen or that I have lost weight, but I am not feeling well. Even though we were only away for a few days, traveling takes a HUGE toll on me. I also had passed a lot of blood the other day, so I am worried that my bloods have fallen a lot. I am suffering today with lots of spasms and cramps. I have gotten this before when we have traveled and I know that it was due to my bloods falling, so I am pretty sure that it is because of that. I know my bloods probably did fall between losing weight on the trip and the blood.
I am having the worst spasms and cramps throughout my entire body and it is really scaring me because they are nonstop. Dad wants to take me to the hospital and to be quite frank, I really might go. Nothing I am doing is stopping them. Dad has been up all night long with me trying to help me relieve the spasms and cramps, but nothing is helping. At the very most, when I take the medicine, I get relief for about 10 minutes but the spasms and cramps just return. I feel so bad that my dad can’t get any sleep tonight because he is so tired from our trip, but I am so glad that I have such a wonderful dad to be able to help me and get me what I need.
I am just in the worst pain and agony. Besides my usual pain and suffering, the pain from the cramps is so severe. I am getting it throughout my body. I am getting it in my arms and hands, in my head, and in my legs and toes. Even though they are worse in my calves, ankles, and feet, I am still getting them throughout my body including my head and I am scared it is going to result even in a seizure because that is really what I feel might happen. You know when you get those spasms and cramps when you are sleeping in your legs and they wake you up in the dead of night that you have to literally get out of bed to walk on them in order to relieve them? You know the spasms and cramps that you get when you see your body actually twisting and contorting in all different directions? Well that is what is happening to me nonstop. It is agony.
Since my bloods fell, I am trying everything and anything to raise them. I am not only taking my ice pops that contain my heart meds in them, but I am also taking my heart pills, and drinking orange juice and Gatorade. I am doing whatever I can to relieve the pain and spasms and to raise my bloods, but nothing is working. I have tried to take 2 Tylenols in addition to all my other medications, but nothing seems to work. I think that besides the bloods falling, I don’t think cutting back on my meds because the doctors want me off of them is helping the overall situation either. After all, my body has been taking them for such a long time and they were afraid about me coming off of the meds too. That is why they said I have to come off of them “really slow” because if I didn’t, it could easily be fatal.
So I am just hoping that this will pass. It has gone away in the past, but it has never been this bad. Like I said before… when I take the stuff… I feel a little better but it is only short-lived. Then it comes right back. Dad keeps saying that he wants to take me to the hospital… but I don’t know if I want to go. I am scared… scared to go and scared to stay home. So I figured that I would also write to you and let you know all that is happening in case something should happen because it is very possible something might. This way you don’t wonder what happened to me in case I am “missing in action” for a while. I also wanted to keep you abreast on everything that is happening.
Like I said though, traveling isn’t easy on me and could very well contribute to why I am feeling this way. The trip home today was especially bad and tiresome, as nothing went right. So besides losing weight and my bloods dropping, it is kinda no wonder that my body is reacting the way it is after all that has happened after the trip we undertook today to come home. It was certainly an experience. In fact, due to what happened on the trip home, it is one reason why I don’t want to go to the hospital. I don’t have my medical records to take with me and if I go to the hospital, I like to bring them with me so that I can show the doctors, nurses, etc. all my records and pictures so that they know what they are dealing with. I will explain what has happened so you are not out in the lurch. Don’t worry. But another reason I don’t want to go to the hospital is that I just got home today and I don’t want to leave so soon. Plus I just can’t just go to a ordinary or local hospital because they can’t treat me. Instead, I would have to travel back to a distant hospital like John Hopkins or something and to make a trip like that so soon… I just don’t know if I can do it.
Anyway… let me tell you all about the trip coming home because it definitely was an experience. In order to get to the main airport to come home, we had to take a private plane from Winston-Salem to Raleigh. The private plane that took us to the main airport to catch our Southwest flight ended up being delayed. The plane itself was actually amazing. It was a brand new plane and was simply gorgeous. My dad sat up front with the pilot and was in heaven. He thought it was awesome to be the co-pilot. But between the weather and everything… we got delayed and I was literally sweating bullets because I thought we were going to miss our flight home.
I kept watching my watch because I was freaking out since I thought we were going to miss our flight home since we were leaving so soon. You should have seen me, as I was in the backseat of the plane sweating bullets while my dad was having the time of his life in the front because he thought it was so ‘cool’ to be the copilot in the front seat and the pilot was showing him everything. I kept giving my dad looks and everything but my dad was like ‘we were circling and couldn’t do anything anyway… so why not learn… couldn’t do anything about it anyway.” But I was really sweating bullets thinking we were going to miss our flight home.
When we landed, we literally just made the flight. When we had to check in, the check-in guy took so long… for some strange reason he was taking forever. I was watching people come and go and watching the time tick away. I thought I was going to die. Then when we passed through security, we went through with this other couple that was really slow and giving them trouble. They wouldn’t take off anything so that they could be checked out like their shoes and such, so we had to wait for them to remove each of their shoes, clothes, etc. Then we had to wait for them to be ‘patted down’ and everything else. They were just so slow and were taking their time, which was time that we didn’t have. I was like ‘our flight is going to leave’ but they didn’t care. So my dad was like ‘forget about taking us’ because the southwest staff was pushing me to the gate and my dad literally grabbed the wheelchair and took me and started running to the gate with me in hand. I never saw my dad run so fast with pushing me in the wheelchair. He was like “excuse me … excuse me but we are late for our flight.” I thought he was honestly going to hit someone. I never saw my dad like that.
We just made our flight and the only reason we basically made it was because they held it because there was a mechanical problem. Thank goodness for that. But guess what? Because this plane ended up being delayed, it forced us to land later than it was supposed to and as a result, it forced us to be late for our connection in Baltimore. We were so concerned about making it that when we got to the next flight (which we just about made) we realized that my dad left our carry-on suitcase on the LAST flight. I was going to die because that suitcase had everything in it including ALL my meds, medical records and my teddy. My dad didn’t realize that the bag was missing until we were actually in the jet way and ready to actually step on the plane. Talk about good timing, right?
When my dad told me what he did, which was that he didn’t have the bag, I thought at first he was kidding with me because he has a knack of joking and pulling my leg. But then when he kept saying it, I was like “you didn’t.” My dad thought about running back to the gate of the last flight but it was so far that he thought he wouldn’t make it back and the flight would leave without him. So the crew called over to the other plane in hopes that they would be able to retrieve the bag. The pilot was even really nice to hold this plane up so that they could try to retrieve the other bag but unfortunately they couldn’t find it. It was a black bag in the overhead bin with so many others… did I actually think they were going to find it? You should have heard everyone on the plane though… they were pissed that the pilot was holding the plane because of ‘baggage problems.’ Little did they know it was because of us? I can’t blame them because if it was on the opposite foot, I probably would have been pissed too because who wants to be delayed… u know?
But even though they couldn’t retrieve the bag, they made calls all over to notify everyone about the ‘lost’ bag so that everyone in Baltimore, North Carolina, Buffalo, etc. knew about it before we even landed in New York. When we landed and I went to the lost and found in New York and when I contacted each of the Lost and Found areas in Baltimore, North Carolina, and Buffalo, they all knew about it already and knew about what was in it. I couldn’t really believe it. I guess they all knew because they couldn’t take any chances with it considering it had medicines in it and everything. It had everything though in it… my medicine, medical records, and my teddy. There is a reason why I pack my medical records, medicine, and teddy in the carry-on suitcase, which is so that there is no chance whatsoever that they can get lost. Well… now look what happened. Even though I had more medicine in the house and I could always get a new Teddy even though I really loved this bear because my parents got it for me to go to all my treatments with me and had it engraved and was also the bear that I held to help my tummy pains, I was upset because my medical records were in there. Even though my medical records were basically all on my computer and I could get another copy printed, it did have pictures of my body turning different colors, x-rays, etc. that were not copied and were irreplaceable and that was one reason why I was really upset that it was lost. That is one of the major issues why I don’t want to go to the hospital today too because I don’t have my records to show and alert the doctors to all that happens with me because the pictures and such show everything.
By the time we got in the car to go home from the airport, the plane that we were originally on and that we left the baggage on had reached its next destination, which was Buffalo. They had searched the plane again and my dad told them that he thinks that he left it in row 13 or so, which was extremely helpful. We also told them exactly what was inside. After all, who else has all that medicine in it and medical records? We aren’t talking about little about of medicine either… so once you look inside… they could easily see it was my bag even though it didn’t have my name on the bag. I kept saying to myself that if I could get my iPad back that I left on the plane after reporting it ‘lost,’ then someone would definitely turn in this bag. But still… I wasn’t going to be 100% sure. But luckily when we were on the way home, we got the phone call that the bag was found. So it is on its way back to me even though I had to pay for it to be shipped.
In the meantime of the bag being lost though, I was really upset about also losing my bear because that bear was really important to me. My parents bought me the bear and it went into every treatment with me. It was engraved on the paw with a little message of ‘love’ from them and it was so very cute. It was a VERMONT TEDDYEBAR and I loved it. It even wore a snowsuit and was named FALBEAR. This was the bear I held on to every night because it was the only thing that helped my stomach the most. No other bear could do the trick. So since I was so upset about losing it, my mom had ordered me a new one in the meantime to replace it.
However, my mom ended up ordering me the same exact bear. I couldn’t believe she did that. I told her to order me one and at least name it FALBEAR2, but she said it didn’t fit, so she ended up naming it the same, which was FALBEAR. I really hope that it is a little different like the fur or jumpsuit is a different color because I hope it isn’t identical because I would hate to have 2 exact bears, but it is the thought that counts anyway! The bears can be identical twins. They should both be here today since they are both being shipped ‘overnight,’ so we shall soon see what they look like and how much they match!
I have finally come to some conclusions though. Remember how I had to make decisions on my next plan of action because I didn’t know what to do in regards to whether I would go to Georgia to have the ketamine coma, go back to North Carolina to have the machine placed in me, or go to California to have the tubes put in me to try to ‘buy’ me time as well as have the surgeries to remove the stool that I am loaded up on and remove the obstruction and such? I am still proceeding with the 8-day ketamine coma in North Carolina in November, but like I said in an earlier blog, I have to be off of all my meds… so it won’t be until then. But I had to do something during the summer, and I had to decide what to do. But I think I finally came to a decision.
I never thought I would be so certain on something. I never thought I would be able to come to an answer and actually feel so sure about something. But after the way I have been feeling lately and then after how I felt tonight, I have made a decision to go back to California for the surgeries. I can’t take the pain in my stomach anymore. I can’t take not being able to eat anymore. Every time I eat I get into huge pains and it is torture. I can’t eat basically anything and the little that I do eat, I literally vomit up and I literally crawl into a ball on the couch in pain because it is so intense. I just honestly can’t take it anymore. It is killing me. I also can’t take not being able to go to the bathroom. It is just getting too painful and exhausting trying to eat and go to the bathroom and doing all this. I am already ‘blacking out’ too when I try to go to the bathroom. In addition, I can’t even swallow. I can’t swallow my food and I can’t swallow liquids or even pills. It is only getting worse and if I can’t take it now… what am I going to do if I don’t do something because it is only going to get worse like I said. If my bloods are dropping and I am losing weight now, what is going to happen if I don’t have this surgery? It is only going to worsen and I don’t think I can honestly afford for that to happen. This is really warning signs and I am lucky that I am overcoming this now. We don’t know how long my luck will last. You body can only suffer so much ‘trauma’ or be able to endure so much of low bloods and such. You know? It is going to give out sooner or later. So I really need to take care of this because it is getting so bad. I got to do this I think before it is too late.
Besides my body not being able to handle the overall situation with my weight and bloods being so very low, I don’t think I can handle the pain anymore either. Like I just said… the eating is getting to be so excruciatingly painful and I can’t swallow anything. So…. I think I reached my breaking point. I think this needs to be taken care of. It has to be really bad if I am thinking of the tubes and want the obstruction cleared up because I was really fighting it before because I didn’t want them. I really was hoping to be as ‘normal’ as possible, and I was hoping that I wouldn’t have to end with tubes and such because I wouldn’t be able to eat. If I got the tubes, eating would be done with and I was afraid that I would always be hungry since I couldn’t eat anything, as well as I was afraid that no one would want to go out with me because who would want to go out with me so that I could just ‘watch’ them eat. The tubes would bypass my stomach and go straight into my intestines and as a result, I would never feel full. You feel full because food passes through your mouth and you swallow it, in addition to going into your stomach. The reason you feel full and satisfied is because you brain registers this action and feels it in your stomach. Since I won’t be able to put anything in my mouth, swallow, or have things in my stomach (it would go directly into my intestines), I would never feel full even though I would technically be full because I would be fed into my intestines. So I would always have hungry stomach pains. That was another reason I didn’t want the tubes… I wanted to be able to eat. I didn’t want to stop ever eating food. I didn’t want to feel the ‘hunger’ pains and I didn’t want people to feel uncomfortable around me with just having me ‘watch’ them eat.
I also was hoping that I could get away with the tubes because I didn’t want to be the bionic woman. I have had so many things robbed from me because of this illness, and I was hoping above all that I would at least be kinda normal in the fact I wouldn’t need tubes. I already look weird because I discolor like a chameleon because of this illness. I really didn’t want to have tubes protruding out of me on top of that too. I would have tubes to put stuff in, as well as a vent (a tube to release gas because I become so distended because I am so paralyzed and can’t move the gas along). I know it is probably for the better, but I was hoping deep down that possibly they would be able to fix this and I would be able to avoid these tubes.
I am also going to California to remove the obstruction. I can’t take the pains from the obstruction anymore. I was also scared about having this done because I was scared that I was going to have to end up getting a colostomy, but I just can’t take it anymore. We don’t even know if it is an obstruction or a colon twist. If it is a colon twist, then it is even a more emergency to have it done anyway. The doctors are afraid that with all the gas and air that is in me that besides it putting all that pressure on my organs and shutting them down, it is going to twist my colon and it will end up in a real emergency. So… at least now we will have that taken care of as well. I have just reached my breaking point between everything and I can’t take it anymore. Hopefully it won’t be a colon twist and it won’t be something major. Hopefully I won’t even need a colostomy. I am hoping that since I am having all this done at Stanford in California that it won’t have to end up in a colostomy and such because it is a top hospital in the nation and I am hoping that with a top surgeon working on me… they might be able to save me from having to get it. After all… they don’t call the hospital Stanford and have the reputation of being one of the best hospitals in the nation for nothing. U know?
So I finally have made the decision to go to California. I am going to probably call in the morning to finalize everything. I finally reached my breaking point. I just can’t go on like this. I think it is more important to raise my weight and bloods because I can’t afford for them to drop anymore. I see and feel exactly what is going on and it isn’t good. I just can’t do it anymore and I feel what my body is going through and I honestly don’t think my body can go on much longer like this. So I kind of have no other choice. I am also hoping that when I go for the surgeries that they will also give me high doses of ketamine because I will need it anyway when I undergo the surgery to help stop the disease from spreading. So I am hoping that even though I have the surgery, I will get two for the price of one because the ketamine I will receive in result of the surgery will be an added bonus… something I definitely need and could use. So hopefully I am making the right decision.
So that appears like everything. I think I told you everything. I wanted to let you know the very latest as to what is happening with me, as well as what the upcoming plans are. Like I said… it looks like I will be heading to California for the surgeries and then of course I will have the ketamine coma in November because I need to come off some of my medications, which I am hoping will be possible.
I know I sound like a broken record already and a ‘crier’ but my family and I desperately need your help in trying to raise funds. We really need help because treatment is very costly and we are having an extremely difficult time paying for it. We can barely even pay our mortgage and even putting food on the table at times is hard. Going to California is going to be extremely costly, and we really need your help if we definitely are going to make it possible. Between the cost of the traveling, the time my dad will have to spend away from work (2 weeks) because there would be no income at that time, the cost of the hotel, the cost of the car so that my dad can get to and from the hospital each day, copayments, etc. it is going to amount to a lot of money because this trip is going to be over 2 weeks long. I am already starting to calculate the cost of how much this trip is going to cost me and it is just going to be amazing. Just being in the hospital is going to cost me $150 a day and $100 for each surgery/procedure/scan that I have because even though I have insurance coverage, I have to pay a copayment.
It’s amazing that you pay so much for health insurance and it pays for diddley. I guess I should be thankful though for what it does pay because it could always be a lot worse. But you would think that the cost we pay for health insurance, which is not cheap, we would be totally covered and I would be able to afford the necessary treatment that I require. But unfortunately health insurance is only good until you actually NEED it. You know? So we really need your help. I know I am asking a lot, especially when the economy might not be so good. However, if you can help me raise funds to help me raise money for my treatment in California in addition to my overall treatment that I need, I would really appreciate it. Besides the treatment in California, I also have to worry about my other much needed treatment and still need to afford such as ketamine comas in New York (the ones I need every other week especially now since I am coming off my meds), appointments, medications, procedures, copayments, etc. Like I said before, we are having problems even paying our mortgage… how are we going to afford all this… let alone this huge trip to California? Over 50% of our income is already handed over in copays and premiums.
I desperately need help raising funds and only hope that I will be able to raise the funds needed so that I will be able to continue the needed treatment I require. Ask yourself what it would feel like to be on fire. At the same time to have your hand slammed over and over with a brick. Normal light in the house feels like walking from a movie theater into a bright sunlight. You can’t eat-or you vomit and after a while… YOU BEGIN TO WASTE AWAY. In addition, your teeth fall out and your “supportive friends” drift away… one by one. The only ones are at your fingertips-the few hours a day you can stand the light o the computer screen. You have one hand flush pink and warm to the touch, and in briefly touching the other, it feels like ice, is white as snow-but feels like fire. You can’t even go to the ER because the nurse checking your pulse hurts and doctor exams throw you into a crescendo of pain that many (not all) cannot comprehend. These are only a few of the many reasons why I need treatment.
Any help that you can give me… even if it is just passing word of this website and bringing attention to it would be greatly appreciated. In many ways, my disease is the worst of both worlds: it’s a debilitating disease that’s both difficult and costly to treat. But left untreated, it can cost me my life. So I really need as much help as I can get to raise funds before its too late.
Well… I guess I am going to rest. I have had a busy and hectic day today. Hopefully everything will simmer down soon. I know it won’t go away, but hopefully at the very least that the spasms and crams will lessen once I get my bloods up a bit. Please continue to pray for me. Tomorrow I also have an appointment with the surgeon for my osteonecrosis. So we will see what he has to say. I will keep you posted.