What is going on? I just wanted to write briefly to update you on what is going on because I went to the doctor today and found out some news. I am sharing it because I didn’t want it to ‘build’ up with all the other stuff, I wanted to get it off my chest, and I can’t believe what is actually happening.
I got really bad news today in fact. Talk about the gift that doesn’t stop giving, right? Well… this disease certainly keeps that motto alive. It just keeps giving me problems after problems… nonstop. I can’t believe how I never get a break from it. Every time I think that it can’t get any worse or that I experienced it all… it somehow manages to get worse and I get slammed with another problem to deal with due to this wonderful disease!
I went to the surgeon today and now I know why this doctor is not seeing any new patients and why it is literally impossible to get an appointment with him. He is simply one amazing doctor. He was such a thorough doctor and when he was examining me, he kept saying things to his ‘team’ about everything he saw when he was exploring my mouth for the ‘lesions.’ After all, he didn’t just come in alone to see me. Instead, he brought in a whole entire team. I knew from the way he was talking right away and from the way he was examining me that if he couldn’t figure out and tell me what was going on, then no one would be able to do it. I knew I was finally in good hands. Plus… not only was he really knowledgeable, but he excellent bedside manners and took his time with me. He answered every question that I had and even if I asked it a million times… he answered it without getting angry or anything.
Never would I think though he would tell me the results that he did. I really can’t believe what is going on. I am still in disbelief of everything that is happening because I didn’t even think that what is going on is actually possible. Then again… what actually has been “believable” with this disease? Everything that has occurred has been something unheard of and something I would never think was possible… so why am I in disbelief that this is happening as well?
The surgeon told me that my body and such are really deteriorating from my overall conditions (disease). This being the case, my bones in my mouth are actually dying off and protruding through. Can you believe it? My bones are actually dying in my mouth and coming through. You can actually see real bone in my mouth and there are lesions around it because of the inflammation. This of course is not good. They said that eventually the entire bone will come through and break off. I can’t believe it. Can you? I never heard or would even think this was possible.
I am in so much pain from this and unfortunately there is nothing that can be done. I even asked the doctor if he could ‘accelerate’ the process of breaking the bone off because I am in so much pain, but he said he doesn’t want to do anything that could possibly cause more problems. He said that he wants ‘nature to take its course.’ I can’t believe that there isn’t anything I can do or take to relieve some of the pain because it is so painful. I can’t take it. But, he said there is absolutely NOTHING that can be done. So… I am just left to suffer with the pain and agony of this now too on top of everything else I am suffering with. It is even worse though because besides ALWAYS feeling it all the time, it hurts even worse every time something touches it and therefore, it makes it even more difficult to eat or drink. Even when he was examining it, he had to try to ‘numb’ it because it was soooo painful. Yet even with the numbing he did and my mom giving me her hand to hold on to, but it didn’t do much good. The doctor does have me coming back though because he wants to continuously monitor it. He also said that when the bone does break off, they will analyze it and such. I don’t even want to think about what it will look like or what my mouth will look like without these pieces of bone.
So now I keep touching all the bones that are protruding in my mouth and I keep wondering. Not only do I keep touching it in amazement (I do have to admit that I am quite amazed that I have actual bone coming through and protruding all into my mouth because I would never think that it would be possible) but I also keep wondering how much longer I am going to suffer like this. I keep wondering what is going to happen to me because like the doctor said, “eventually the bone is just going to ‘break’ off.” I wonder what is going to happen at that time.
I did ask him the reason why this is happening though. The doctor really couldn’t give me a definitive answer as to “why!” He said that it probably has something to do with my overall condition and my poor immune system. However, he also said that he thinks it has something to do with one of the medications that I take for my illness as well. So… here we go again… another time I am kicked in the ass because I try to HELP myself by taking a medication. But, if I don’t take that medication, I would really be in worse shape in other aspects. So I am really between a rock and a hard plate.
I have severe osteoporosis and my bones are really weak due to my illness and such. The doctors are always worried that I am going to get a life-threatening fracture or something. In fact, my bones are so weak that they have me go for these really powerful infusions of “Reclaste” once a year. They are so powerful that they really need to be done only every other year, but since I am in such bad shape, they do it every year for me. Initially, I had really good results to it. The first time I took it, it looked so promising because I got so much bone back from it. I got like 30% back in my hip 15% in my spine and 10% in my arms and such. However, we haven’t really gotten great results since the initial time. I actually have been losing bone despite taking the medicine yearly. But, the doctors say that without it, it probably would be even worse. So, they don’t want to stop it. The problem is that “Reclaste” is also a bisphosphonate and therefore, it is also thought to cause and contribute to this bone problem that I am having. So my mom asked if I should stop going for the infusion because of this new problem that I am having, but the doctor said that we have to “weigh the risks with the benefits and we can’t afford for me to risk getting a life-threatening fracture.” So like I said before, I am in a lose-lose situation.
On top of everything else though, I am also getting blood blisters. So now I have that to deal with as well. Never a dull moment! But, that is nothing compared to these bones coming through my mouth. I just wish there was something that could be done.
Wanna hear something though? From being so ill, I have so many records because I have so much that has happened with me between all the procedures, treatments, medications, medical history, etc. So When I go to a doctor, I literally kill an entire tree because there is just so much papers that have to be printed because of my records. In fact, when you put them all together in a folder,it actually weighs some weight. When I give all my records to the doctors, doctors are really astonished by all that I give them. Not only are they astonished by how much it is ‘organized’ but that there is just so much of it. Usually the doctors can’t even look at it all during my appointment because there is so much of it and that is one of the major reasons I give them their own copy. When the doctor asked me if this was his own personal copy, I was like “it is your reading material for the next couple of nights.” He was like “You aren’t kidding.”
So… I just wanted to let you know the update as to what is happening to my mouth. I guess I am just meant to ‘suffer’. I really can’t take it anymore to be honest with you. There has to be an answer to all this. Someone out there has to get me out of all this pain and suffering. How much can a person take? I never get a break from it. My dad feels so bad that he can’t help me and when we heard this latest news, all my dad could say was “I am so sorry.” He wants to make everything better for me so badly, but unfortunately there is nothing that he can do to protect me from all this or make me better.
We are also having problems with the Mayo Clinic. I am scheduled to go to the Mayo on May 27th. I am really looking forward to going because I am hoping that they possibly can do something since they are the top hospital in the country and see only the rarest cases and the cases that can’t be helped other places. They are also doing a study there that looks like it could benefit me. However, like always, I am running into obstacles there too because nothing ever goes smoothly for me.
When I go to the Mayo, the doctors want me off of all my medications, especially all my narcotics because they don’t want anything to be ‘masked’ or hidden. They want me off for at least 2 weeks prior. However, I am on so many medications, as I take over 50 pills a day, and I am too sick to be able to come off of them. I have also been on them for too long to actually just “come off of them.” I would really have to be tapered off quite slowly and it would literally be impossible. When we discussed this with my doctors, my doctors said it is quite impossible to come off of them because I will go into seizures, coma, and even death since I have been on them for way too long and too high of a dose. So I don’t know what is going to happen now because Mayo is saying that they want one thing that is quite literally impossible to achieve. They are asking the “impossible” from me.
I don’t know what to do because I want more than ever to go to the Mayo. I really have high hopes for them because there really aren’t a lot of options I have elsewhere. Even though I know that they have the study going on there, they are also Gastro docs, so they are also very knowledgeable as well and therefore, they might have another way of treating me that we don’t know of. But unfortunately we won’t know until we see them.
I really hope that there is something else that can be done because there really isn’t much else that can be done. In fact, there really aren’t many except for the big transplant (small intestine, large intestine, stomach, pancreas, liver) and for the ketamine coma out of the country. But these are 2 radical and dangerous treatments that are extremely expensive. Even though we don’t know per se if I am going to get into the ‘research study’ at the mayo, we are still hoping that they might have something else up their sleeve since they are known to deal with the hardest cases that exist… cases that can’t be helped elsewhere. Mayo has performed many miracles and I am hoping to be one of them. So I am just hoping that with talking to them, they will still be willing to see me even though I can’t get off my meds.
I am really not doing well. My body is just literally shutting down and it is really showing it because my hair is falling out, bones are protruding in my mouth, my nails are so fragile that they are breaking off, etc. I honestly don’t know how much more I can take. I am trying to hang on, but I must say… it is getting harder than ever. I desperately need help, but unfortunately all the help that is even out there depends on the green paper, which is something that we don’t have. I really wish we could find a way to fundraise because I need treatment more than ever. I am really suffering. Even if this treatment can’t ‘cure’ me… at least I can get treatment that will get me out of my suffering. You can’t imagine what it is like to suffer in pain and agony 24/7. I am at the point where I am literally running up the walls because I can’t take it. All I can do is cry and say, “knock me out.” Even when I went for the last ketamine coma, I was in so much pain that I was crying as I was going under saying “please knock me out already!” I just can’t take it anymore and I desperately need help. I desperately need others to help me get the necessary lifesaving treatment I need not only to help get better, but at least to help me get out of my suffering. There is only so much a person can suffer.
If you have any suggestions on how to raise money or can help in any way, please let me know. In the meantime, I guess all we can do is pray.
I have been trying to keep myself busy as much as possible in the meantime so that I try to keep my mind off of all the pain and suffering. Even though it is literally impossible to do that, I am still trying. I have been trying to help out my dad as much as possible with his business so that he can get new customers and perhaps bring in more money and therefore, I made him a new website and Facebook page. If you want to check it out you can at www.intercountypestcontrol.com and https://www.facebook.com/pages/Inter-County-Exterminators-Inc/260726404063647?fref=ts. It is still in the progress, but you can see how it is so far. If you are looking for a good exterminator for your pest control or termite needs, I must say that my dad’s company is certainly the absolute best. Give him a call!!
My favorite author of all times will soon be releasing her next book. She only releases one per year, so I am really excited that she will be releasing it shortly. I love the books written by Sophie Kinsella, and she will be releasing her next book called “Wedding Night” on April 23rd. What I don’t understand though is that even though it isn’t being released til that date, you can still read it from cover to cover on the computer at Amazon. When you shop at that site, you can get a glimpse of inside the book and they actually put the entire book on the site. I can’t understand why they would do something like that because people can just read it online and on the computer rather than buying it and downloading it. Does it make sense to you? So I was thinking of starting to read it already because I am so on “edge” to read it already, but I don’t know if I can read off of a computer and be forced to read only off it if I want to read from that book. I much rather read off my iPad instead of being forced to sit at my computer. You know?
Recently I did stop by a store that my old dancing teacher owns. I used to take up dancing when I was younger and since then, my dancing teacher has opened up her own bake shop. So since the weather was nice this past weekend, my mom took me out to the shop to not only say “hello” but to also see what yummy goodies we could get to eat. She had all these different breads and cookies, and she even had dog biscuits for Max. Unfortunately I couldn’t eat a lot of it because of my GI system, but they looked so delicious. I can’t wait for the day when I am able to eat and enjoy all these wonderful foods. But, I was really glad to see my old dancing school teacher because I haven’t seen her in such a long time. Who says you can’t have a ‘blast from the past!’ While I was there, she also gave me a bear to take along with me for treatments. After all, I just love my bears.
One of my biggest thrills of getting better would be to be able to walk around on the outside with a cup of something drink. I can’t eat or drink without really getting sick and vomiting and therefore, I can’t be like everyone else and walk around with a drink at hand. One of the biggest things I want is to be ‘normal’ and in that sense, I want to be like everyone else and be able to walk around anywhere sipping a ice-coffee or a frap or an ice-tea. I would do anything for that. I know… it sounds stupid to have that as one of the things to look forward too, but I really can’t wait for the day to be able to walk around the outside with a drink in hand.
Well… I guess I will be going now. I really just wanted to let you know the latest. Guess I just gotta be like the ENERGIZER BUNNY and keep on going in the meantime.