As promised, I am writing to update you on what has happened during my trip to North Carolina. What a trip this has been! I must say that it definitely has been an experience. But then again… what trip has not been an experience? It’s so weird when we travel because everyone knows us in the airport. It is so nice (but weird) how everyone knows us from people at the ticket counter to the people that push me in the wheelchair to the gate, to the security people, and to the people at the actual gate. I guess when you travel so much and when you look as sickly as I do, it is hard to forget me.
Before we actually arrived at our final destination in North Carolina, I was thinking that this trip to North Carolina wasn’t too bad because the actual traveling time wasn’t so bad compared to all the other trips that dad and I have been taking. I mean dad and I have been used to going to places that would take close to the entire day to travel such as going to California and Minnesota. We were used to going to places that even required a time change. But this trip only required us to travel for 3-½ hrs. to get to North Carolina and at least we were in the same time zone. It was big difference.
I thought it was an easy trip until we actually arrived in North Carolina. However, the airport that we had to land at was an airport that was quite a distance from our destination that we needed and as a result, we had to take a private plane to get to our final destination in North Carolina, which was an additional hour on top of the already 3 ½ hrs. Little did I know what I was going to be in for in these private planes?
I was shocked to be honest with you about how I was going to get from Raleigh to our final destination in North Carolina in the private plane. I looked at the plane and I was like “how am I ever going to get in there?” But I had no fear because my dad came to the rescue like always and was able to pick me up and put me into the plane. I can’t believe that he managed to get me in there to be honest with you.
What a trip it is to be in a private plane. I must say that it is definitely an experience. No wonder they ask you your weight and they have weight requirements. You can basically feel anything and everything. We had to wear these headphones that provided not only a way of muffling out the noise, but also a way to talk to each other. However, it definitely wasn’t like traveling on a commercial airline and as a result, my illness really kicked up.
Traveling is extremely difficult on me no matter how I travel. However, traveling on that small plane really killed me because of the ‘crampness’ and because of how there was no air-conditioning really. It was a really hot day and with someone with my disease, it was not a good combination. I have severe autonomic dysfunction and as a result, I cannot sweat even if I get hot and I end up overheating. Therefore, when I was on the plane, I literally almost passed out because of the heat. My illness really acted up because of the intense heat and I kept ‘fading’ in and out. My dad was really worried about me because I just couldn’t cool down. If we didn’t land when we did and get me into someplace ‘cool’ … I honestly think I would have died… and I am not kidding.
Being on that private plane and having my illness act up especially because of the heat really killed me and as a result, my disease really took off for the rest of the day. For the remainder of the day, I was extremely weak and couldn’t move. I was having trouble breathing. I was in lots of pain. I was also very cold and couldn’t warm up once they cooled me down. My dad was really worried about me and kept asking me if I wanted to go to the hospital. But I figured I would just hold out and hope that this would pass. My dad always takes terrific care of me and makes sure that I am ok. Even if I am sick and not wanting to eat, he makes sure though that I get up and eat.
I am so fortunate that my dad took me this weekend, especially since it was Father’s Day. Even though we couldn’t really have a ‘real’ Father’s Day with a BBQ like we always do, I tried to make it as special as I could. At least I got to spend the day with my dad and that is all that count. In fact, when we went out for dinner, I told him that he should order himself something ‘good’ on the menu because it was ‘Father’s Day.’ My dad always chooses the cheapest thing because of the issue with the money, but I figured that since it was his holiday, he deserved to ‘treat’ himself. But even though he did try to treat himself this time, he ended up not liking what he ordered and suffering in the end because it came with couscous and such and he didn’t realize it. He is not a fan of that. So the one time he actually spent money on himself… he wasn’t thrilled with his meal. But not to worry… he had my meal to eat too because I barely ate. I just wish I could have made his Father’s Day more special because he certainly deserved it.
I saw the doctor today. So of course he has his game plan. What a game plan it is! As you know, we went to see this doctor because he was supposed to put me into the ketamine coma that I needed for about a week because I need a more intensive coma than the one I am getting in New York. However, even though this doctor is willing to do it, I just hope that I make it that long because he has a whole protocol for me to do in order for me to have it. When I do undergo it, I will have it in the ICU for 7 days and my dad will literally have to spend the entire time with me in there. They said that my dad literally “moves” in with me because I need a family member with me 24/7 in order to have the coma. The reason is because it is really risky and because ketamine can give you severe hallucinations. If there is a complication, I need him there. Plus, if I float in and out of consciousness, it will be helpful to see a familiar face there, especially with the hallucinations. So I feel better knowing that my dad will be there all the time with me.
The doctor said in order for me to have the ketamine coma for 7 days, I will have to be off most of my medications because the ketamine that they will give me will ‘interact’ with the medications and I won’t get the full benefits. However, the medications that I am taking are quite a lot and I am not on a little dose either. I take over 50 pills daily and with a high dose of the medications, you can imagine how long it is going to take to come off of those meds. Plus… who even knows how my body will function without those meds because there is a reason why I am on those medications in the first place.
Some of the medications that I have to be off of are painkillers and it scares me to even think that I won’t be on any. I am in so much pain as it is and to think of the possibility of being in more pain, I just don’t know how I am going to handle it. I suffer 24/7 with pain and it is the most excruciating pain out there. After all, it was shown that on the pain scale, it ranks as one of the most painful diseases. It has a score of 42 out of 50 on the McGill Pain Index. In comparison… Arthritis pain is ranked about an 18, Cancer pain is 24, and Chronic Back Pain a 26! The only thing close to RSD pain is the amputation of a finger and that is quick whereas my illness is 24 hours a day, 7 days a week. So if all these medications are doing something, I would hate to feel what it is like if they weren’t. The doctor seems to think that these medications aren’t making that much of a difference in me anymore and therefore, I will be able to come off of them.
Since I have to be free from all these medications, I have to be ‘weaned’ from them. I cannot just stop them abruptly because it can cause me to go straight into cardiac arrest. So in order for me to do this and be weaned in a ‘safe’ manner, I am looking into having the ketamine coma from this doctor in November. I don’t honestly know if I can make it that long. November is a long way off and I am rapidly deteriorating. I cannot eat, drink, my organs are shutting down, I am in tremendous pain, I can’t go to the bathroom, I can’t swallow, etc. and therefore, I don’t even know if I have the time to wait until November. Plus, I don’t even know if it is a good idea to wait until then because I can have it then in November and it not even work too. Then I would have waited all this time for nothing and also wasted this precious time as well. So we are thinking of other options.
Also during this time, the doctor is thinking of putting in another machine into me. I had a machine in me a few years ago, but it failed. It didn’t work in me and as a result, it had to be removed. However, the doctor claimed that it was a Medtronic system and that the machines have changed quite some in the time since I have had it and as a result, he said the new machine might work in me using Boston Scientific instead of Medtronic. The new system would be able to control all four limbs because it will have leads to basically all over my body whereas the Medtronic system only controlled my legs. But knowing that I failed the machines once, I honestly don’t know if I want to go down this path again. After all, surgery isn’t the easiest thing on me and exacerbates my illness. Plus having foreign equipment in me will definitely make my illness completely worse too. So I just don’t know if I want to go down that route again since I had it already.
If I did go down that route, the doctor said that I would need a psych evaluation and after getting clearance, I will return to North Carolina for them to insert the machine. At this time it would be external because it would be considered a ‘trial.’ He would then allow me to go home for about a week and see if the machine made a difference. After about a week at home, I will then have to return to North Carolina to either have the machine removed or implanted permanently. If implanted, I will have to spend about a week in North Carolina because it is intensive surgery. They said that the battery will go into my abdomen even though it probably would be very prominent because of how thin I am. Not only will the surgery probably take a huge toll on my body, but all that traveling probably will wreak havoc on me as well. We aren’t just talking about one trip. We are talking about going back and forth multiple times to get this stimulator in. But, we have no other choice because it has to be ‘trialed’ before it is implanted and the doctor wants me in my home environment and such to see how it does.
So I have a lot to decide on. I don’t know if I should undergo the stimulator or not. Plus, I don’t honestly know if I should wait to have this ketamine coma in November because I honestly don’t know if I am going to make it that long. Like I said too, we don’t even know what the coma is going to ‘fix’ and it would stink to wait all that time and find out that it didn’t do as much as we hoped. We would have wasted precious time because I am deteriorating and getting worse in the meantime. Yet, the doctor I saw today said that it might take the mix of the machines and ketamine coma to make a difference.
I am supposed to be going to California in July to be ‘tubed’ and to try to buy time. Since I am deteriorating and losing weight and such, I was heading to California so that they could try to buy time by ‘feeding’ me and trying to work something out for my GI tract. They were going to try to put a tube into my intestines and try to find a small part that was still “alive” and be able to feed me. They were also wanting to put in a ‘vent’ to let out the gas since I can’t expel the gas on my own, which leads to severe bloating and distension. I literally look like I am 9 months pregnant at times and ready to give birth. However, now with this news that we received in North Carolina, everything is now all messed up.
If if I go and get the machines put in me, there is no way that I can go to California. So I have to decide between going to California and getting ‘tubed’ or do I go and get the machines. I have no idea which will benefit me more because I don’t know in the end if the coma is going to help my GI system. It would stink to wait until November and find out that it didn’t help my GI system because I really don’t have that much time to waste especially since I already weigh in the 60s and have a BMI of 10.8. I can’t really afford to go much lower. I definitely won’t make it to wait until after November and then first work on the GI issues because as it is I can’t swallow, eat, go to the bathroom, keep weight on, etc.
There is another possibility but I am not sure if we are going to go down this route. There is another doctor willing to do the ketamine coma on me in Georgia. I have spoken to him on the phone and he seems quite nice and such, but I don’t know who is the better doctor… him or the doctor we saw in North Carolina. If I go to the doctor in Georgia, I won’t have to stop my medications and as a result, I would be able to have the coma now rather than have to wait to November. But the reason that that I am having to wait that long is because the doctor in North Carolina is insisting that my medication will interact with the ketamine and I won’t get the full benefit of it and it won’t work as it should. So who is right? I would hate to go for the coma in Georgia now if it isn’t going to work. You know? But I would hate to also wait that long to November to have the coma because I don’t have that much time to wait.
In addition, the doctor in Georgia is wiling to give me ketamine injections into the actual nerves as well. They are like spinal blocks but instead of using steroids, he uses ketamine. So it is more beneficial and it will help me because it gets to the very core of the nerves. In addition, he is willing to work on my GI tract as well, whereas the doctor in North Carolina isn’t. The doctor in Georgia wants to do a celiac plexus block but instead of using steroids, he wants to use ketamine as well right into the bundle of nerves located behind the stomach and in front of the diaphragm. The celiac plexus innervates a number of organs including stomach, gallbladder, kidneys, liver, pancreas, adrenal glands and blood vessels. A celiac plexus block can improve pain symptoms from any of these organs and it is hopeful that along with the ketamine that it will help me. The doctor is also willing to put in a ketamine pump in me so that I can go home after the coma and still get ketamine 24/7, as well as a nasal spray ketamine to get instantaneous relief if needed. I just don’t know what to do because each doctor has his or her own plan and I am so confused as to which doctor is the better doctor. I have tried to do some research to see if the medications that I am on actually cause the ketamine to have less effects and not work compared to when there is no medication in the body and I can’t find anything about it.
So I really don’t know what to do. I really have to decide though which route I am going to take because like I said… there is only one way that I can go. I can either go to North Carolina to have the machine put in me, go to California to have the tubes put in me and ‘buy’ time, or I can try that other ketamine doctor in Georgia. I just don’t know the right way to go. I was thinking though to try to come off my medications so that I can still have the ketamine coma in November if by any chance I go for any of these above procedures and they don’t work. At least if I do hopefully make it to November, I will be able to have that coma as well and give it a try because I will be off the meds. I know I am extremely fearful to come off the medications because I am in so much excruciating pain as it is, I guess it can’t hurt it try. Worse comes to worse is that it just can’t be done and I go right back on them, right? In addition, hopefully the ketamine comas that I receive in New York will be extremely helpful in helping me stay off the medications because even though I only get them for the day, hopefully it will help control my pain and suffering to some extent since I do get them every other week.
So that seems to be the game plan. I think I am going to call the doctor in Georgia tomorrow and see what he has to say. I really don’t know which is the better option but I do know one thing for certain… I know I can’t wait to November and do nothing in the meantime. All the doctors have even confirmed that I would never make it.
So we are all packed and ready to go home tomorrow morning. We have to take another private plane back to the main airport, but it shouldn’t be so bad. I am hoping it will be a bit easier because we are leaving at 6 AM and it shouldn’t be so hot then. I just can’t wait to get home and see my mom and animals. I miss them. Even though it has been a wonderful time being with my dad who is not only my dad but also my best friend, I do miss my mom.
Well… going to get going. I guess I have plenty to think of. If you ever have any suggestions or comments, please feel free to contact me at Spunkyfal@aol.com. In the meantime, I still need to continue my current treatment protocol and ketamine comas in New York are going to be even more important especially if I am coming off the medications since they will hopefully be the only thing replacing the medications that I am coming off. However, in order to have these needed treatments and ketamine comas, many donations and funds are needed. If you can think of any ways of raising these funds, I would appreciate it. Thanks again for all your continued support and encouragement. It really hasn’t been easy and if I didn’t have your support, I probably wouldn’t have made it as far as I have.