Just wanted to update you briefly!
It is March 5th and from the looks of the weather outside… you would never know it. When is this weather going to end? Not only is it unbearably cold, but also it is wreaking havoc on my body. I really need some warm weather so desperately.
This weather has to let up soon or it is really honestly going to kill me. When we went to the vascular surgeon today, the doctor told me that since the winter has been so relentlessly cold with no real “warm-ups,” it really has affected me. He had confirmed that the cold has caused my circulation to really shut down and that is why my foot and left leg is blacker than ever. This winter has been like no other winter that we have had. It has been so cold and it has basically had no “breaks.” Therefore, my body is really reacting to it.
So the circulation worsening is contributing to the weather, but it is also because of my over all disease worsening as well. My body is deteriorating and my organs are shutting down. It was confirmed also that my organs are shutting down worse than we thought and therefore my circulation is also being affected. In addition, the added stress of all that is occurring with my illness and because of being so worried about what is going to happen with Mexico and worried about the medical expenses isn’t helping either. Everything is just causing me to deteriorate further and causing my circulation to worsen. However, I really have to be careful because it is at the point now where the circulation is so bad now that not only am I discoloring, but also unlike before where I would just change colors and sometimes resume somewhat normal coloration at rare times, I am darker than ever and it is remaining black no matter what I do. This is definitely not good because dark/black means no oxygen and tissue dying. It is when body parts remain black that the doctors are extremely worried and amputation becomes a real concern and possibility.
Therefore, the doctor really wants to start putting me on a new medication called POT. You might also know if it as Marijuana. I couldn’t believe that the doctor actually suggested this to me. He said, “The disease has gotten so severe that I think that the only thing that can possibly help is marijuana. At least it will help with the pain to some extent. It has helped in certain situations where people have had the most horrendous pain from Cancer and other diseases and nothing else has worked. Even though it won’t help per se ‘cure’ your illness, at least it will make you more comfortable.” I have really been on everything under the sun and I already take over 50 pills daily. However, I continue to suffer and I am being tortured 24/7 with absolutely no relief whatsoever.
There are only 2 problems that stand in my way. One problem that stands in my way is that I of course don’t have the funds to pay for it. Of course this is not going to be covered by insurance and therefore, it will have to come all out-of-pocket, which is something we definitely can’t afford. The bills are skyrocketing and snowballing all out of control here that we can’t even pay the mortgage, electric and heating bill, put food on the table, or even pay for my other medical expenses. Not to mention that I desperately need to go to Mexico, which is less than 2 months away and I need to come up with over $100,000. That is why I so desperately need the help of others. If you know any fundraising ideas or possibly can share my website for donations, I would really appreciate it.
Another huge problem that stands in my way is that it is illegal in New York. Even though I need it for medical reasons, it is still illegal. The doctor told me to go to a state such as California to get it, which it is legal in, but that doesn’t really solve the problem because I live in New York and still can’t bring it back. Why can’t New York legalize Marijuana already for medical use? So many states have already done so. Even Jersey has. So I don’t know what to do. The doctor really thinks that this is what it has come down to because I have gone beyond traditional medications. Even though I am rapidly deteriorating, the doctor wants me to at least be ‘feeling’ better!
In addition, the doctor also noticed that I have a plantar wart on my left foot. Never a dull moment! The problems just keep adding up!
This is definitely not good because my left foot is where the illness is the worst and I can’t afford for anything to touch this foot. I am so hypersensitive that I can’t be touched anywhere in my body… let alone my left leg and foot. The slightest touch will literally send me up the wall. So for anyone to even touch my left foot to treat the plantar wart will literally be impossible.
In addition, the skin on my body because of my illness is extremely thin. It is even thinner on my left foot because of the nature of the illness being worse there. Therefore, if anything happens to even bump my body, especially my left foot and leg, my skin will instantly open up. This is not a good sign because not only will it cause me excruciating pain, but also I can’t heal like a normal person. I risk the chance of getting infection so much and they are so fearful that it won’t heal at all. The doctors are especially fearful of any cuts happening in my left foot because that is where the circulation is the worst and if anything happens there, it is quite possible that it can lead to an infection, which would lead to gangrene and then result in amputation. So we really don’t know what to do because we really don’t want to risk getting an infection and having my foot amputated.
It appears that the plantar wart in my foot is extremely deep and big. The roots go really deep and it really should be removed. However, the surgeon said that in my case, he doesn’t know what to do. He said that he doesn’t really want to remove it because of the fact that it is not only going to be excruciating painful for me, but because it entails scraping and such, it will easily open up my skin for a possibly infection, which is extremely likely in my case. However, it is a huge problem because not only is a plantar wart an infection of the skin and a benign growth, but also they are also painful. So it only adds to the pain that I am already experiencing, as people who get plantar warts may feel as if they have a stone in their shoe.
So we don’t know what to do in this aspect. I guess we are just going to have to figure this out!
Well… in a few hours (since it is the middle of the night and I am like the only one awake because normal people are usually sleeping at this hour) I am going to be on my vacation from life. I will be undergoing a ketamine infusion/coma for the day and at least I will be away from my life for the day. This is the only time I can get relief and I look forward to it so much.
If only the ketamine would last. Unfortunately I need a dose that is way too high and it isn’t FDA approved. That is why I need to go to Mexico to have the ketamine coma performed there because the amount I need can only be given there. When I undergo the Ketamine in New York, it barely lasts longer than when I wake up. People might wonder why I put myself under the risk and go for it at all if it doesn’t even last beyond waking up. I go for it because at least while I am under, I am at least at peace and away from this torturous illness. I am out of my Hell for the time I am under the ketamine, which is for quite a few hours. When you are suffering like I am, you will take any relief that you can get… even if it is a split second. Also, even though the suffering comes back basically immediately, we are still hoping that it is slowing down the progression of the illness and “buying” me time.
So dad will be taking me in a few hours to get the ketamine. Thank goodness for my dad because I don’t know what I would do without him. He is so amazing. I only wish I didn’t put him through all this because he doesn’t deserve this. He is 60 years old and deserves to be enjoying his life. But instead, he is working harder than ever and he can’t even enjoy his life. He barely can rest, can’t go on vacation, can’t buy himself anything, can’t go out to dinner, or anything else that a normal person would take pleasure in.
My dad is really something else! He is not only my dad, but he is my best friend, confidant, someone I admire, and my Superman. But I only wish I could get better because I am so afraid that he is going to have a heart attack from all that he is doing. After all, he is no youngster and he is so overworked… not to mention how stressed out he is. But there is nothing that he wouldn’t do for me to try to get me well. He wants to get me well so badly and it kills him so much that he can’t get. He constantly tells me how he wishes that he could take the disease away from me or that he wishes he could ‘switch places’ with me. I tell him though that even if he did, he would never be able to handle this. He may be Superman but he wouldn’t be able to handle this for more than a second. He would gladly give this back to me immediately.
But I only wish I can get better so that I can not only enjoy my life and get back all that was robbed from me by this illness, but I want my dad to be able to enjoy his life as well. I want to do so much with my dad and I want to be able to even have him around to see me become a doctor, walk me down the aisle, etc., which I know is probably only going to happen when I get well.
So we will be off to Ketamine together in a few hours. Going for ketamine doesn’t just help me, but in a way it helps dad too because dad is able to finally ‘rest’ when he takes me. After all, I am there for basically the entire day and therefore he ends up resting and sleeping. What else is there to do while I sleep? I pack him a snack bag, he brings the paper, and he is all set! Even though my dad is Superman, even Superman needs to rest at times. Since he works so very hard and so many hours of the day, at least he gets this time to rest. In fact, when we went to the vascular surgeon today, he fell asleep waiting for the doctor because he was so tired. He was so tired that he even was snoring. I videotaped him to show him because I knew he wouldn’t believe me. This way I didn’t just have the proof that he was sleeping, but that he was ‘snoring’ too.y dad to be able to enjoy his life as well. I want to do so much with my dad and I want to be able to even have him around to see me become a doctor, walk me down the aisle, etc., which I know is probably only going to happen when I get well.
I also got an amazing gift today from a dear friend. I received some little knickknacks that someone made me from scratch. You know those rainbow looms? Well, I was fortunate for her to make me quite a few things such as a panda, bracelet, peace sign, etc. I am so incredibly thankful for the lovely things she made. I’m decorating my IV poles and going to bring then to Mexico with me. This way I have a little touch of home to bring with me for luck!! I remember reading a book that entailed a girl who had cancer and she built 1000 paper cranes for luck. Well, I was thinking of doing the same thing but I was going to make 1000 rainbow loom critters. I was going to then bring them to the hospital with me. However, not only does it looks very complicated, but it is also expensive, and I don’t have the money to waste on rubber bands. But it would have been a nice idea to do because not only would it have been nice to bring to the hospital and decorate the IV poles and room, but also it would have given me something to do.
Well… I am going to get going. I will write more when I know more. Just a tidbit reminder like always that “Help Fallon Fight” Bracelets are still continuing to be sold. They are $5 and come in pink or blue. Contact me through Facebook or by emailing Femirsky@gmail.com, if interested. All money goes towards my medical expenses! Please also email me if you have any further fundraising ideas.
Thanks again for all your support and encouragement.