Just wanted to give you a brief update as to what is going on because new news is known and I don’t want it to build up where it is just too much to write and too much to read. So I figured I would write and let you know the latest.
I wish I had better news, but unfortunately I am still deteriorating. In fact, things have gotten even worse. But, I guess that is going to be the story until I am able to get treatment. Today I got the scare of my life because I woke up and there was blood all in my bed. It turned out that I vomited up blood during the night.
I am really scared because even though I have been suffering with symptoms for awhile and to a normal person they would be ‘scary’ and stuff, I was kind of used to them because even though I was suffering, it was basically the same stuff over and over again so I kinda knew what to expect. However, lately I am experiencing all new stuff and it is even scarier because I am not used to all this “new” stuff. At least in the past even though I was in pain and didn’t like the symptoms I had, I knew kinda what to expect and I kinda knew that it was going to end up to be soughta ok because I had them before. However, it is at the point where everything now is unknown because as I am rapidly deteriorating, I am getting all these brand new things. That is perhaps the scariest thing because I never know how things are going to turn out or what they mean.
I keep thinking what each of the thing I experience mean and wonder how much time I have left because the doctors keep telling me that this is just another way that my body is ‘shutting down’ and ‘dying’ and how I desperately and how I desperately need help ASAP. I am so scared that my time is really dwindling and unfortunately, treatment is so very expensive… money that we certainly don’t have. I am still hoping that the media will somehow run the story or I will somehow be able to get a huge donation, but nothing is happening. I am trying all I can to bring in as many donations as possible, so no one can say that I haven’t given it my “all.” It just stinks that everything revolves around the green dollar and how powerful that piece of paper is. It is like it controls my destiny. I am just hoping that I somehow get enough donations because I desperately need treatment soon or I am certainly not going to make it. I really don’t know how much more I can take.
Like I said before, I am now vomiting up blood. I am really afraid because vomiting up blood is not something that is considered ‘normal.’ I already knew that I was bleeding somewhere, but we were unable to find out exactly where it was because we knew it was in the intestinal tract somewhere because it was in the mucous, but we couldn’t do a colonoscopy due to all the paralysis that is occurring. I can’t be prepped appropriately despite all the different ways that can be done, and therefore it is literally impossible to do a colonscopy to see what exactly is happening. I even have had a NG tube placed in me so that they could pour the mixture into me so I don’t have to swallow it, but even that was a failure. All they could get in me was less the a ¼ of a liter and then the tube ended up backing up and as a result, they had to remove it immediately.
Every way that they could diagnose bleeding is basically not available to me. However, there are very few hospitals that do have the capabilities to do an angiography that could diagnose the bleeding since I cannot have the colonoscopy. During a angiography, dye is injected into the person’s vein to make blood vessels visible in x-ray or computerized tomography (CT) scans. Dye leaks out of the blood vessels at the bleeding site. In some cases, the doctor can use angiography to inject medicine or other material into blood vessels to try to stop the bleeding. However, not only do few hospitals have this, but they have to also be familiar with my illness and be able to deal with it as well because this procedure can really wreak havoc on me and cause many problems that they need to be prepared for. After all, I suffer from autonomic dysfunction and I am extremely hypersensitive. Even a simple little needle stick can cause my whole entire body and disease to go haywire.
I know you are probably wondering why I just don’t go to the hospital now. The reason is that there really isn’t any hospital to go to. I can’t go to just “any” hospital because they don’t know how to handle me. The vomiting is due to my illness and underlying conditions and unless they know how to handle and treat them, they probably won’t be able to get to the root of why I am vomiting blood. This vomiting blood is just a symptom of everything else that is going on. So…I really need treatment for my entire disease in order to be basically helped with the blood. You know? When a regular person vomits blood, they can go to the hospital and be helped because more than likely their underlying condition is not rare and can be treatable. But, as you already know, not many people are aware of my illness and I am so very complex that I need top-notch specialists and specialized costly treatments that I cannot afford. That is just one more reason why I need to raise funds. I need to be able to travel out-of-state so that I can get to an appropriate hospital like HOPKINS, or Cali that can help me.
Not only am I vomiting up blood, but my stomach is also very distended. I am very uncomfortable and I constantly wonder about it because I know from previous experiences with my grandma that as the body shuts down and goes closer to death, the stomach and abdomen expands. So, since the doctors say how desperately I need help and how rapidly I am deteriorating, I only fear the worse. I fear that I am nearing death as well because I am having this distension. But besides that fact, it is also so very uncomfortable because it is like walking around like you are pregnant. It literally looks like I am pregnant. I joke around that I am ‘full term.’ I am so full of air that someone really needs to pop me.
Being this bloated isn’t even a good thing because it is exerting so much pressure on my organs, which is also causing additional problems. My organs in my body are already failing and this extra pressure is causing extra problems on top of everything else.
So, I do have some good news in a way, but it is going to take some more fundraising in order to actually make it really happen. I am being sent to the MAYO CLINIC in May. I was accepted there and for all those who don’t know about the MAYO CLINIC, it is one of the best hospitals in the United States. To be accepted at the MAYO, you have to be extremely sick and suffer from a very rare disease that they feel can’t be helped anywhere else. So many people try to get into this hospital and can’t. The waiting list for this hospital is so long too. However, they are seeing me right away, as I am scheduled to leave Memorial Day. Even though it is about 1 ½ months away, it honestly is quite amazing that I got an appointment so soon. I just have to last that long.
So… I just got to make it to May and I will be off to Rochester, Minnesota. I am really excited because I am really hopeful that perhaps they can help me. They are doing a clinical study there that I really feel will be able to benefit me if it does indeed work. In fact, I really believe that it could be the answer we all have been looking for. I do realize that it is only a study and it has a long way to go, but to know that they have this and that it has the potential to work, it does give me a lot of hope. I realize that the trip to MAYO is also going to be very expensive but so many great things have come out of the MAYO clinic when all hope has been lost and I am really hoping the same goes for me.
Mayo Clinic in Rochester, Minn., ranks No. 1 for digestive disorders in the U.S. News & World Report Best Hospitals rankings. The study focuses on the interstitial cells of Cajal (ICC), which are needed for normal stomach emptying. According to the leading doctor of the study, “”The ICC act as intestinal pacemakers for smooth muscle function,” he says. ”They also amplify neuronal signals, act as mechanosensors and set the smooth muscle membrane potential gradient. Both human and animal models demonstrate loss of these cells in gastroparesis.” Accordingly, he also states, “”When the mechanisms that normally counteract oxidative stress are impaired, especially upregulation of heme oxygenase-1, ICC are lost and gastric emptying is delayed. In mouse models, restoring HO-1 prevents and even reverses these cellular changes and restores normal gastric function.” Heme oxygenase-1 (HO-1) is an important protector against oxidative injury and oxidative stress results when this protector is low.
In the stomach wall, HO-1 expression occurs in a particular subset of macrophages — CD206-positive M2 macrophages — whose cytoprotective effect on ICC appears related to the production of small amounts of carbon monoxide. According to doctors, “When the upregulation of HO-1 is lost, M2 macrophages are replaced by proinflammatory M1 macrophages. These cells, which do not produce carbon monoxide, are associated with ICC damage and gastroparesis.” In short, the critical factor in gastroparesis development is the upregulation of HO-1 in M2 macrophages.
In mouse studies, hemin, a biological product of red blood cells, has been shown to boost the production of HO-1, thereby reducing oxidative stress, allowing repair of the ICC network and normalizing gastric function. Now, Dr. Farrugia is recruiting patients for the first randomized controlled clinical trial to determine whether intravenous hemin therapy is equally beneficial for people with gastroparesis. So I am really hoping possibly that I can be part of it.
So, I am hoping that with donations and such, I will be able to make this trip and they will be able to help me. I received my “welcoming” packet from the MAYO CLINIC today and I was so astonished by it. This hospital is really something. They really take such great care of you.
For one thing, they situate all your appointments for you and the appointments are extremely thorough. They also give you detailed instructions to follow prior to coming to your appointment so that you don’t skew any of their medical information that they will attain seeing you. They don’t want anything that can possibly bias or conceal what is going on with you. As a result, they have me stopping some of my meds, and even have me fasting the day before. It isn’t that hard for me to ‘fast’ the day before because I can barely eat anything anyway because I can’t swallow due to my illness, but they also said that I can’t have any liquids from the evening on that has calories. That is the difficult part because since I don’t really eat, I need all the calories I can get through liquids. I also don’t know how I am going to manage to stop my meds that they ask. I guess I will have to speak to them about that.
I was given a whole packet in the mail that would help me with my stay from everything from hotel accommodations to my appointments to things to do in the area, etc. It was like I was given a whole traveling book on the MAYO clinic. I certainly wasn’t expecting something like this. But I guess if this hospital has a ‘concierge’ service, I shouldn’t be surprised. It is like the whole city is built around this hospital and there are all these tunnels and sought connected to it. Everything is around this hospital and it is made in a way so that even the sickest patients can enjoy things. I guess they know that people there don’t really get to enjoy things because this hospital is made for the ‘sickest’ and ‘rarest’ cases and therefore, they want to make things accessible to them since they are there for long periods of time.
Well… I just thought I would also tell you that I have a coma on Monday too. I can’t wait for it because I am suffering so much. At least when I go for it, I will have one day of rest. I have been in so much pain lately that at least the coma will give me a little break from it even though once I come out I am back to reality. I also hope that nothing seriously happens because of all the new stuff that is occurring with me like the bleeding and such.
I am also scheduled on Thursday to see the surgeon/pathologist for the lesions in my mouth and throat. Even though we know they are not contagious and we are pretty sure it has something to do with my poor immune system because my immune system is failing, the doctors really have no clue what they are. Instead of them healing or remaining the same, they are continuing to worsen. I have an appointment with this surgeon/pathologist at the hospital who is supposed to be the BEST and if there is someone who can figure it out… it is him. I am so lucky that my doctor was able to get me an appointment with him because he was not accepting or willing to take on new patients. In fact, when I spoke to them today to go over something with the secretary, the secretary even said to me “I don’t even know how you got an appointment because the doctor wasn’t giving out appointments to new patients.” So I am hoping that this doc will really be able to figure out how to help me because these lesions are really painful and annoying. At least let something be able to be helped.
I really need help because I am having such a hard time swallowing. I don’t know if it is because of the lesions or because of the paralysis and autonomic dysfunction or both, but I can’t swallow literally anything. Even the very few things I was able to swallow before like egg whites and such are getting to be impossible. Even taking my ice-pops are getting impossible to take and it is essential that I have them because it has my heart meds in them to raise my bloods. I am at the point where taking any medicine is literally impossible. I used to be able to get it down with carbonation, but even that now is getting to be a big problem. I don’t know what I am going to do because I desperately need to take these meds, but I just can’t get them down. It isn’t like I take a little amount of meds either. I take over 50 pills daily and no matter the size, I can’t get them down. If you can think of any way of getting them down, I would really appreciate it.
I know I am getting worse too because Missy hasn’t left my side. Whenever I am doing worse than usual, Missy never leaves me. That is one way that my parents can always tell that I am doing worse. In fact, she has been sticking so close to me that she has literally become annoying. She won’t leave me alone for even a second. She follows me everywhere and all she does is want me to hold her. She even meows at me in the morning, but my parents think it is that she is trying to make sure that I am OK and it is her way to make sure that I am alive because she ‘wakes’ me up with it.
But wanna hear something great? I taught Missy how to talk. Yup… you heard right!! I taught her how to say HI. It really is something. When she comes in, I can have a conversation with her because I can get her to say HI all the time with her meowing. It really is cool. I have the most awesome pets. I taught my dog Max how to slap Five and I taught Missy how to say HI. Not to be outdone, I have a magnificent turtle too that isn’t like your typical turtle. Instead, when he sees people come into my room, he starts to bang on the cage because he loves to come out and walk around. Then when he gets annoyed he will literally trash his cage and start throwing everything around in it and end up spitting everywhere. My animals are really something. But they all get along. It is so funny because I have a turtle that actually chases the cat and dog…who would think?
This past week I had a special treat. Even though I lived in my area all my life, I never had a treat called a HEWLEE before. So many people have had one, and I never did and always wondered what it tasted like. As a result, a friend of mine treated me to one. Even though I had a very hard time getting it down and was only able to get down about 2-3 spoonfuls (that of course came back up afterwards because nothing stays down), at least I can say that I had it. My HEWLEE was simply amazing. It was cookies and crème ice cream with brownie muffin and peanut butter chips and caramel in it. Of course since I couldn’t eat it, I didn’t let it go to waste. I gave it to my dad and he was in heaven.
My best friend also visited me this week. I am so fortunate for her because without her, I don’t know if I would still be able to keep going. She really gives me so much encouragement and support. She is truly wonderful. She constantly calls me throughout the day to make sure that I am ok and I always start and finish my day with her. Not only does she make sure that I speak to her at night and she wants to know how I am doing and how my day went, but I can be assured a call every morning at the 7 o’clock hour to say “good morning” and to make sure that I made it through the night. She truly is wonderful. To think… she is like “superwoman” because she goes way beyond what a friend has to do. She has a husband, a child, and a career, and yet she always takes time out to help me. She even constantly does research and contacts doctors to try to help me. There have been times that she has even taken me to doctors and it is nothing for her to say to me “get ready I am coming to get you” so that she can take me to a doctor if she knows I am sick. She has also been trying to do anything that she can to help me raise money. She is simply amazing. In fact, her son was the reason why I started to try to eat the baby food PUFFS and it was much gentler on my stomach. As Len Wein once said, “A true friend is someone who is there for you when she’d rather be anywhere else.”
But what one thing that is truly amazing is the emotional support that she gives me. Since I have this illness, I must say that life isn’t always pleasant. In fact, I am not going to lie… my life is pretty stinky and miserable. The only thing the 3-letter word FUN and my name have in common are the first and last letters. However, when she comes over, my whole life changes. I feel like Cinderella because my whole life transforms when she is able to go to the ball. However, just like Cinderella’s life transforms back to her unfortunate life when the clock strikes 12, that is basically what happens to me when the clock strikes 2 because she ends up having to leave and I am left to take meds, injections, eat, vomit, etc. It is a constant nonstop cycle that doesn’t end until I go to bed. It is definitely not the life I like to live. But when I am with my friend, life can’t be better; it is like I am living a dream. Plus, she has a son who is simply the cutest. I am so fortunate to have them.
Bernard Meltzer once said, “A true friend is someone who thinks that you are a good egg even though he knows you are slightly cracked.” My friend never judges me, and I am so fortunate to have this friend because I don’t have to put a ‘front’ up. Usually when I see people, I try to look as good as possible and put up a façade so that they don’t know how sick I really am. That is why people don’t really understand how sick I really am when they see me because I try to conceal it as much as possible. I always believed that if you “looked good, you feel good.” But underneath that false exterior is a person that is suffering immensely. However, with my friend, I don’t have to put up an act with her or cover anything up. She is with me until the very end. We do everything together whereas some people would be afraid of me if they knew. As Jim Morrison once said, “Friends can help each other. A true friend is someone who lets you have total freedom to be yourself—and especially to feel. Or, not feel. Whatever you happen to be feeling at the moment is fine with them. That is what real love amounts to—letting a person be what she really is.”
Well…I guess I will be going. I just wanted to let you know the latest. When I find out more info, I will definitely let you know what happens. In the meantime, I just gotta hang in there and hope and pray for the best. I hope and pray that more donations come in because I desperately need them in order to receive the lifesaving treatment that I need. If you have any ideas to fundraise or can do anything, I would really appreciate it.
Talk to you soon!