Here is just another brief update on what is happening. Don’t know how coherent or long this will be because just got home from a ketamine coma and the anesthesia is wearing off. I am really not feeling well, and as the anesthesia is wearing off more and more, the pain is getting worse and worse.
It surely stinks that I am becoming more and more in pain as the time is progressing. But at least I was “resting” for the day while I was in the coma. But, I guess now it is ‘payback’ time for all that I did today. My body hates when I ‘bother’ it. Now, as the anesthesia wears off, I will be suffering even more until my body stabilizes again. The autonomic dysfunction will severely worsen and so will the pain. Everything will also feel so much worse than it usually is (which is hard to imagine since it always feels so horrible) because I am going from feeling kinda (ok which is hard to imagine because I never get a moment free from feeling suffering) to being in severe pain. It isn’t a gradual movement either… it is like SLAM!!
Ugh though… besides the pain, I am suffering so much with my tummy too. My stomach feels so expanded like I am pregnant (even though I know clearly that I am not). It feels like my stomach is inelastic and can’t even expand a millimeter more. I am soooo thirsty too and every time I try to drink something, my stomach hurts even worse because it can’t expand any more at all. Nothing is making me deflate. I literally need someone to pop me like a balloon. It feels like there are thumbtacks in my stomach and I am incapacitated with pain. All this because of my paralyzed GI tract. I just wish they would find a way of helping me because nothing helps. I literally have to lay here like this wait for it to pass. It could take hours for it to happen, but in the meantime… here I am suffering and unable to move. When is this suffering going to end? That is why I wish I could stay in the coma forever. At least when I am in the coma, I don’t have to be bothered with all this.
I had a coma today, as well as back surgery. I am still getting pains down my left leg and knee and we are not sure where they are coming from. We think it is partially due to my illness and such, but we aren’t completely sure that it is 100% from that because I can’t walk on it, extend my knee (even when sitting), or even touch the one tendon/muscle/nerve going down my thigh to my knee. I literally collapse when I try to stand on it and everything. I am also severely discoloring and even though that is a known fact to happen with my illness, it has never ever been this bad. I have had discoloration where I went to a deep purple discoloration and such, but never to a BLACK and never remained black either… even when I raised it. Usually when you raise the body part that is turning discolored, the normal coloration will return to a point. However, that has not been the case lately and therefore we are getting scared because blackness means that no oxygen whatsoever is getting to the tissue and cells and tissue are dying. We are so afraid that I am going to lose my legs and such.
Since I have had this discoloration for so long with my disease, the doctors have always been fearful of me losing my legs. They said that even if I was ‘cured,’ it was a good possibility that I could lose my legs later on because of all these years that my legs and other extremities have been deprived of oxygen and turning colors. However, it is my legs that are the worst. It is almost like a diabetic when their toes become black and have to have them amputated except I don’t have diabetes and it is more than just my toes. But, I never really wanted to believe them because they never turned this ‘black’ before.
So… since I have been having all this additional pain and discomfort, as well as the discoloration and such, the doctors wanted to investigate further where it was coming from. They wanted to see if it was from my disease or from something else. It was kinda weird to be coming from my illness because the pain that was occurring from what I was explaining was only down a specific part of my thigh and around the knee in addition to all the other pains that I was feeling. So, they originally thought that it was my hip because I broke it a couple of years ago and thought maybe it was contributed to that. They thought that perhaps it was being cause as perhaps the way it healed or maybe because of arthritis from there or something else attributed to the hip. After all, I never had surgery to repair my hip when it happened even though it was so warranted.
I couldn’t have surgery even though I needed it so badly because of my illness. I am also so thin that the screws/bolts would never be good for me. As a result, I was on extreme bed rest for like 16 weeks. Can you imagine? My dad literally carried me around wherever I needed to go for that amount of time while everyone said a prayer that the hip would take and I would avoid the necessary surgery. Thankfully it did.
However, after looking into the pain coming from the hip, it was proven it was not coming from there. So they were then thinking it was coming from my Spine… more specifically the L3 nerve. So… they did surgery on my back a couple of weeks ago and then they did it again today. It really isn’t helping or doing anything, so I am highly doubting it is from there.
Either way though, I had the coma today so that meant at least I had a day of “rest.” So at least that was good because I have so much on my plate lately. Not only have I had to think of so much and make so many decisions, but the pain has also been out of this world. Everything is just worsening.
Want to hear something hysterical? I found out that when I am under the coma, my dad does various things to keep himself busy. I mean… he has to do something when I am under the coma, right? He sits there the entire time, which is like over 8 hours just looking at me, so he must get bored, right? So he has to find some way of keeping himself occupied. I usually pack a bag of food for him that he goes through easily. I pack him granola bars, nuts, etc. He feels funny having ‘lunch’ there in terms of a sandwich… but he doesn’t feel funny eating all this ‘crap.’ Luckily, the staff at the place is so nice there and really goes out of their way to make us feel welcomed. They make us feel like family and always ask my dad if he wants anything. Of course my dad turns them down though because he doesn’t want to ‘bother’ them. He suffers from wanting something rather than to say, “yes” to an offer.
My dad is the weirdest. Not only does he like to grab my camera and take pictures of anything and everything… from me to him (which includes his hair, his bald spot, his teeth, his eyeballs, etc.) but he also sits in the chair and spins around in it like a little kid. He literally spins around and sees how many times he can go around without getting dizzy. Can you imagine? I can’t believe that he does that.
I am so lucky though that I have my dad there even though he does all these weird things. I feel so ‘safe’ and comfortable when he is there. When I first started going for comas, they wouldn’t let him into the room. As a result, I used to prepare my iPod with all this music and such so that it would keep all the hallucinations and dreams away because ketamine is notorious for causing it. Ketamine is really scary and going into a coma is scary in itself too. I have to constantly remind myself that I am in a coma and can’t move because even though I can hear everything going on, I am literally paralyzed. People don’t realize that people in a coma are still very much conscious to a point. That is why it is important to have people visit comatose patients because they can tell when someone is present and not. So… since I was all by myself, I used to have my iPod to keep me company and to avoid having those fears. However, since I am now allowed to have my dad… I don’t use the iPod so much because this way I can hear my dad. My dad is still getting used to that fact that I can tell everything that is going on even though I may appear not to be able to. I can wake up and tell him everything that has happened even though he thinks I am ‘sleeping’ and unconscious.
I am also so lucky to have my dad there because since I am so overly sensitive with my illness, I need extreme care especially when transferring from one place to another. Therefore, when I am under the coma and need to be put into the operating room, it is easier for my dad to carry me than for them to first transfer me into a gurney and then onto the operating table and then visa versa. Plus, my dad knows how to carry me and be gentle, so it is better off that way too.
Anyway, guess what happened? When I went into the operating room today with my dad and the doctor was getting me situated after my dad placed me on the table, I started to scream in pain because they were touching me. For me to be in a coma and to be screaming like that… you can just imagine how much I am in pain because I am supposed to be “unconscious” and not feeling any pain whatsoever. So you know what the doctor did? He started squeezing the IV bag with all the mixture of meds faster and faster to put me into a deeper coma. Well… that was the end of me complaining. My dad told me that clearly “shut me up!”
I also learned today at the coma that the medications that I am taking are extremely a ‘lethal’ combination and the worse combination that I can take. However, it is the only combination that works, so I am literally playing with fire. I take over 50 pills daily and I found out that the combination of taking Morphine and Nucynta together can literally kill me very quickly especially in the state that I am in. When my dad heard this, he wanted me off the drugs ASAP. My dad would rather me suffer than to have anything happen to me because he is ‘selfish.’ He doesn’t want anything to happen to me. I know that if anything did happen to me, he would never recover. But, since this is the only thing that ‘helps’… there is no way I am going to come off of it. If I am feeling this bad and it is the only thing that ‘helps’… there is no way that I am going to not take it and feel worse. I would definitely never make it then. I would go insane. So… I am willing to take the risk.
We also spoke with the ketamine doctor about a new form of treatment that we are thinking about trying. We are thinking about trying Hyperbaric Oxygen Chambers. The only thing is that it is quite expensive. Although we are fortunate that the place that is giving it is willing to work with us and give us a ‘discount,’ it is still a problem when you have absolutely no money. When you are broke, you are broke. There is just no two ways about it. As J.D Salinger put it in CATCHER IN THE RYE, “Goddam money. It always ends up making you blue as hell” and George Bernard Shaw said, “Lack of money is the root of all evil.” So… since we don’t have the money… we are thinking long and hard about this because even the minimal amount that they want us to pay is really too much, especially when you have difficulty paying the mortgage and putting food on the table already.
In addition, besides the money issue, I would have to commit to at least going to the chamber 5 times a week for at LEAST 20 sessions. So, we are talking basically every day for at least a month. That is really asking a lot of my dad, especially when the chamber isn’t even located around my house. My dad would literally have to give up so much work to do this because of the traveling to and from the place, as well as the two hours that I am in the chamber. So, by doing the hyperbaric oxygen chamber, it literally kills the entire day. Since we are struggling so much with the finances, we really need to consider this because it entails my dad missing so much work and when he doesn’t work… no money is to be made and bills can’t be paid. Plus, the business isn’t doing well and no business will be going out if he can’t work. So not only will out family suffer because we will have no income, the business will suffer because there will be no one to do the work. You know? If anything happened to the business because of me or if my family lost the house (which is basically the only thing we have left now and even that is getting really difficult to pay the mortgage), I would never forgive myself. So, we really have to think long and hard about this because nothing would be worse than wasting this time and money because it is going to be a great hardship. After all, it isn’t PROVEN to work. This is just going to be another ‘experimental’ procedure and since I am such a rare and complicated case that had nothing worked in the past… who knows what will happen this time. You know?
Let me tell you a little though about the Hyperbaric Chamber that they want to do on me. They will place me in the Hyperbaric Oxygen Chamber for 2 hours each week. It seems like something that you watch from outer space, right? But if this works, I would be so grateful. They have been doing this on many patients with neurological diseases such as Diabetes, wound therapy, thermal burns, gangrene, carbon monoxide poisoning, osteomyelitis, stroke, autism, etc. and have been getting good results. However, it isn’t covered by insurance for my condition because it isn’t backed by scientific research and anecdotal evidence alike.
You are actually given 100% oxygen in the chamber. Hyperbaric Oxygen therapy is the use of prescribed high-pressure oxygen, which is the use of oxygen at a level higher than atmospheric pressure. Hyperbaric oxygen therapy increases the amount of oxygen your blood can carry, which enables the oxygen to be dissolved into the hard-to-reach plasma, lymph, and the cerebrospinal fluids surrounding the brain and spinal cord, providing a greater opportunity for healing. In fact, under these conditions, your lungs can gather up to three times more oxygen than would be possible. An increase in blood oxygen temporarily restores normal levels of blood gases and tissue function to promote healing and fight infection.
Another wonderful feature of this therapy is that it reduces swelling, decreases inflammation and stimulates the growth of step cells. I have all this swelling and inflammation in my body due to my illnesses, especially my GI tract has it because of the paralysis and such, so hopefully it will help it as well. I am also in pain because of all the inflammation occurring, so perhaps the pain will decrease as well by having this therapy. By stimulating the release of substances called growth factors and stem cells, it promotes healing. Finally, it even strengthens the immune system by creating an adaptive increase in one of the body’s antioxidants (superoxide dismutase), and free radical scavengers. As a result, it promotes the ability of white blood cells to fight disease and infection. This would hopefully help me because I don’t have an immune system and can’t fight anything. Therefore, I am susceptible to everything and if I should get anything, I can clearly die easily because everything is magnified to me. Even a simple cold is like the flu to me.
So clearly, it might have beneficial results if it did indeed work for me. If I did go for it, I would go down to about 33 feet below sea level, which is equivalent to 2 atmospheres. It would take about 9 minutes to reach that level and then it would also take 9 minutes to come up out of it because you have to go down and up gradually because technically you are being “compressed” and “decompressed.” While essentially painless, some patients may experience discomfort in the ears similar to altitude change during air travel or driving in the mountains. However, once you are down to the designated level, I should feel nothing and all I have to do is lie there and let the oxygen do its work.
There is plenty of stuff to do there to keep you occupied. You can watch TV, movies, sleep, etc. There is even a telephone so you can talk to the person that takes you because that person is allowed to sit next to the chamber with you. I did laugh though because the technician that does the chamber said that I probably wouldn’t like his movies that I had on hand and would probably want to bring my own because they were all “action” movies. Little did he know that my dad only likes “action” movies and therefore it would be the only thing that would keep him interested.
The only thing that is bad about the oxygen chamber besides the money issue is that you can’t wear anything or have anything in there since it is 100% oxygen. Pure oxygen can cause fire if there is a source of ignition, such as a spark or flame, and adequate fuel. Because of this, you can’t take any items into the hyperbaric oxygen therapy room that could ignite a fire, such as lighters or battery powered devices. They give you a whole list of things you can’t bring or wear, but that should be the worst of it, right? You can’t wear basically anything including hairspray, nail polish, deodorant, make up, perfume, etc. You can’t even wear your own clothes or even socks. You can’t wear anything that has elastic. So they do give you special 100% cotton scrubs to wear. However, they already said it will be tremendous on me because they only have one size. Oh well. I just wish I could wear my stockinette on especially my bad foot because anything (even air) that hits my left foot (which is my worse of the two feet) causes me more pain than anything. I also hate looking at it too because of the way it looks. However, that isn’t allowed either.
So… we really need to decide on what we are going to be doing because we need to start making plans. My dad’s ‘busy’ season will hopefully be starting soon and he could really use the work. Therefore, he really needs to be around for it because if he isn’t, he will miss it. This ‘busy’ time is only short-lived and is only in the springtime and summer because that is when the weather breaks and bugs occur, especially termites. So…. He can’t afford to miss it because this is the time money is made and he depends on this time for the income to come in so he can pay the necessary bills. So… we really can’t wait so long because we really don’t want to take him away from it.
In addition, I am supposed to be leaving in March for California to be tubed and put into a ketamine coma while I have this ‘tubing.’ They are trying to buy time because my body is rapidly deteriorating so much. They don’t know how much more time that I have. They also want to make me stronger because I need the transplant that is so rare and risky, and they don’t think I will survive it in the state that I am at all. So, they are planning on tubing me and putting me into the coma at this time so that my body will hopefully not ‘reject’ it. Hopefully the coma will make me so comatose that my body won’t know it is there. If that doesn’t work, they are talking about putting in a central line and giving me TPN again even though I failed it in the past. They are going to try it again, but even that is really risky and can’t be done, if at all, for long because it can cause a massive infection very easily especially since it is in the central line.
But, since we are having a huge problem with money, we don’t know if that is going to happen. March is basically 2 weeks away and right now we can’t really afford it. Plus, if we end up going with the hyperbaric oxygen chamber, it will really take a huge chunk out of our pocket. So… we really need to make decisions because the wrong one can really kill me. By staying here and putting off California for this oxygen, I am really really really taking a big risk even more than ever because I definitely can’t afford both at this time. We are thinking if I went with the oxygen that I would go to Cali in May, but we don’t know if I can last that long. My BMI is 11.7 and I am barely weighing in the 60s. So, time is really in the essence considering females can’t live below a BMI of 12.
We are also thinking about going to Florida as well because that is where my ketamine coma doctor for my neurological disease/autonomic dysfunction disease is located. Even though I need to have a ketamine coma for my neurological disease/autonomic dysfunction disease badly, it is different from the one I will be receiving in California and therefore, I need to have it done in Florida. This will clearly be additional expense because it is not covered in Florida and will cost me over $20,000. This doctor is also the doctor that is supposed to be sending me out of the country because the amount of ketamine that I require is not FDA approved. I really am deteriorating from the neurological disease/autonomic dysfunction as well, so we really are between a rock and a hard plate… we really don’t know what to do or what to do first. The wrong decision can really be the wrong one and cost me my life.
In the meantime, I am scheduled for a vascular surgeon on Tuesday since I am turning black. So… we will see what he says. Even though I wanted to see a different one, he wasn’t covered by my insurance plan and therefore, I had to seek the help of a different one. I just hope that he will be able to help me. I hate being tossed around like a hot potato because they don’t know what to do. You know?
It is getting really difficult to hang on. Even taking medications are getting impossible. When I can’t even get down my ice pops, you know something is really up. But… I am still trying to hang in there.
My books that I wrote for my parents finally arrived. They arrived just in time for Valentine’s Day. They loved them. I even wrote a little note on the inside cover to each of them to personalize it to them even more. I really hope that they like it.
Wanna hear something? Wanna hear a miracle? Remember how I said I lost my iPad on the plane when I went to Florida? Well… guess what arrived in the mail the other day? My dad said it would never happen. The plane was on its way to Las Vegas after and he said to me “someone’s luck started earlier than they expected.” I never even got to speak to anyone. All I could do was fill out a LOST AND FOUND form. But… it finally arrived. I thought for sure I would never get it back, but I did. What luck, right? I had locked it from my phone when I found out I lost it and put a sound on it to play when it was turned on. So you know what happened? When it arrived at my dad’s office, the box was blaring. My mom (since she works there) couldn’t imagine what it was. I got notification that it was found on my phone and since I did, I located it on the map where it was and saw instantly that it was at my dad’s office. I immediately called my mom up and told her that it was there. Then she knew and realized exactly what was in the box making all that noise. What a story, right? If only my computer now would turn out to be such a great story because I still have the broken laptop.
My laptop had broke a day or so after returning home. Unfortunately I lost everything on the computer too. However, since I was so low on funds, I couldn’t afford to get a new one. I lived on my laptop too because since I can’t get out of bed or off the couch, I used to spend all that time on the computer there. Even at night, it was great because I would stay in bed and be able to be on the computer. It was great because this is the only contact I have on the outside world since I don’t get out. But… it broke and now I am trying to fix it even though APPLE told me it is a ‘lost’ cause and I know deep down it is too. But, what can you do when you have no money, right? I am in the process of selling some stuff, so maybe when I do… I will have some money for it.
Well… going to get going… not feeling well at all. Hope everything is well too. Like always, if you have any fundraising ideas or can help in anyway possible by spreading the word that HELP is desperately needed or bringing attention to my cause, I would really appreciate it.
Thanks again for all your encouragement and support. I would definitely not be here today if it wasn’t for you.