I know it has been quite a while since I have written, but a lot has still been happening and I haven’t been well enough to write. I also didn’t want to write until I knew all the information completely because I didn’t want to give you any wrong information. So I figured that since there is so much to know, I would at least try to give it as much as possible.
I guess I should start by saying how I am rapidly deteriorating and desperately need help. I guess that goes without having really to be said already because I say basically the same thing in every posting. However, each time I think that it can’t get any worse and that I suffered enough… It continues to worsen. I just keep spiraling downward and deteriorating. I cry all day long and even cry all night long as well. It is so unfair that no matter what I do, I just continue to suffer. I don’t get a moments relief. I just honestly don’t know how much more I can take.
I know I say that all that time and I am still plugging away, but to be honest… I am so tired. It is at the point that I am getting even too tired to fight. I am losing my will to fight because no matter how hard I try, I just keep hitting brick walls and continue to suffer. I suffer physically, emotionally, psychologically, etc. This is definitely not a life a 32 year old should be living and I don’t even wish this life on my worst enemy. I feel like a dog when they are teased with being given a bone because I feel that I am being teased with treatments and medications being held in front of my face that can possibly help me and yet, I can’t even try them because we can’t afford them. Its just so unfair that I am suffering so much and there could be something out there to help me and yet I can’t even try it to alleviate my suffering because we can’t afford it on our own and unfortunately we aren’t receiving the donations that we desperately need in order to attain these life-saving treatments.
To begin with, I have to still find a way to raise money for the Cleveland Clinic because we are going to be heading there for surgery and it is going to be extremely expensive. We are leaving in November for a week so that we can meet with the doctors and finalize the testing that is needed for the upcoming surgery that will be taking place in December. Luckily, the doctors are allowing me to come home on Thanksgiving because they know how important that holiday is for me and how much I want to spend it with my “family.” The doctors know how important it is for me because this can be my vey last “thanksgiving” since I am not doing well at all and I am rapidly deteriorating. The doctors have already clearly expressed that if something isn’t done fast and quick, I will not make it much longer because I am a time bomb that is detonated and going to explode. Plus, the treatments that I am going to need and undergo are extremely risky and dangerous. That is why I very few hospitals perform these treatments and I have to travel across the country (even to Mexico) to seek these treatments and top specialists because there aren’t many knowledgeable specialists in the area. You would think that living in New York would give me all the needed opportunities I would need to get well, but that is definitely not the case at all. So besides the money needed for the treatments itself, the medications, the appointments, etc. I also have to worry about the traveling expenses as well.
Besides going for the pre-surgical tests in November at the Cleveland Clinic, I will also be seeking the expertise of the endocrinologist because I need a bone infusion that cannot be given in the New York area. I desperately need this infusion because my bones are extremely weak and they are scared that I am going to get a life-threatening fracture.
I am also going to be seeking the expertise of the heart surgeon. One of the surgeries that I will have to undergo in December is heart surgery because I need to put lines and ports into my heart. I will also need to put a central line into my heart to serve as an emergency access port into me for the massive surgery that I will be having later on that month when I have my colon removed. They also are going to be using those ports for TPN because since I am so weak, fragile, and only weighing in the 60s, they are going to try to make me as strong as possible to recover from this surgery to remove the colon as well because it is massive surgery. In addition, the ports will serve as lines to put medications and take bloods from me because I am constantly being stuck with needles, which can easily cause a massive infection on top of everything else… not to mention the pain I am enduring each time that can be alleviated by having this done.
But I also need to see the heart surgeon as well because it was discovered that I have dense calcium calcifications in my coronary artery. So since I have these blockages now, the doctors have to also take care of this as well because I can easily have a heart attack and/or stroke because of it. Never a dull moment.
I am also going to be seeing one the top specialists in my neurological illness. There are not many doctors in the world who are really knowledgeable and can say that they are a “specialist” in my illness. Yes they might be ‘familiar’ with my illness, but there are only about 3-4 doctors that are really specialists in my illness who have been doing research, writing papers on it, and experimenting with different surgeries, and talking about it at conferences. So the doctor that I am seeing happens to be one of them and in fact he doesn’t even see “new” patients. Fortunately I have seen him in the past and therefore, he will be seeing me again.
It is very important to seek the expertise of this doctor because I have really worsened and need desperate help in this area especially since I can’t get to Mexico right now to get the radical intensive ketamine coma in Mexico, which is the treatment that I ultimately need but costs over $100,000 and we can’t afford it. I have developed severe spasms throughout my entire body that need help as well. I was also told that with everything that is happening, I am also in need of brain surgery.
Yes… you heard right. I am in need for brain surgery. Now on top of everything else I need brain surgery. I feel like a guinea pig and a huge science experiment. Yet, the doctors have discussed it and I need the brain surgery because they think that this is the only way to help my neurological disease besides having the expensive ketamine coma in Mexico, which we can’t afford. Not only will the brain surgery hopefully help my neurological condition, but hopefully it will also help my severe gastroparesis as well.
Since I am in need of brain surgery and brain surgery is one major surgery that you want the ultimate best doctors performing, we are planning to have the surgery also at the Cleveland Clinic because they are known as being one of the best hospitals. During this time, they will be undergoing very rare, risky, and extremely dangerous surgery. They will not only be operating in my brain, but they also are going to be putting a machine in my brain that will hopefully help me deal with the illnesses and alleviate it.
The brain surgery has been saved for the rarest cases. In these cases, it has been successful in the sense where people are able to not be as paralyzed as they was prior to the surgery, the pain is reduced, is able to eat, etc. All of them have experienced some benefit in both pain and mobility from the treatment. They will be operating in my motor cortex area.
As stated before, I am scheduled for surgery in December. I am going to definitely be having the heart surgery to have the ports and lines placed on December 8th. I will then undergo 14 days of TPN to try to make me stronger. On December 23rd, I will then have my colon removed. Depending on how bad it is when the colon is removed, it will determine how long I have until I need to receive multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, spleen and pancreas.
So in the meantime I gotta hang in there. I have been doing so badly that they increased the amount of ketamine comas/infusions that I receive in New York to a higher dose and to a weekly basis. Although I was taking the ketamine at home every night, I was only having the ketamine comas in the hospital every other week. But since it has gotten so badly, the doctors have switched me to every week.
The doctor also increased some of my meds and placed me on Klonopin. It has been doing me the best help at night because it has been “knockin” me out most of the time. This medicine is better than the others because it is also supposed to help with all the anxieties that I am feeling, as it wouldn’t be normal not to feel overwhelmed with all that I am going through. You know? In addition, this medicine is the one medicine that has the least impact on my GI system and the least addicting out of all the other meds that I am on. This is a good thing because I don’t want to be on such addicting medications or medications that will further harm me and further ‘paralyze’ my GI system.
However, my miracle drug still happens to be my ketamine and if I could remain in the ketamine coma 24/7… I would. Even taking the ketamine at home is the best thing out of everything. The only problem is that this ketamine is extremely expensive and we can’t afford it. It is the ONLY medicine that gives me relief throughout the illness. But, like I said before, it is not a drug that is easily affordable. You can’t even get it at a regular drugstore. I have to go to a special pharmacy so that they can especially compound it for me.
So not only are we having difficulty paying for treatments, going to appointments, traveling, etc. we can’t even pay for medications that I desperately need. I desperately need my meds in order just to get by. My medication is extremely expensive and I don’t take a little amount either. In fact, I take over 50 pills daily and the amount of medication that I take is enough to kill a horse. Doctors have already said that a 300-pound man wouldn’t be able to handle the medication that I take on a daily basis.
But my medication is so very expensive and it isn’t even all covered by insurance. For example, a little bottle of ketamine costs me about $200 and it will only last me about 1- 2 weeks (if I am lucky). So… if you can please help me raise money so that I can at least receive the medication that I desperately need to be somewhat comfortable, I would appreciate it.
In addition to all that has been happening, I also recently got into a huge car accident. The car accident was so massive that the air bags went off and I was really hurt badly. This stupid huge Yukon truck hit us in the back and then plowed us into the car in front of us. We really had no place to go because it happened on a roadway that was over water and if we went to the left, we would have hit the cement guardrail and therefore had no place to go, and if we went to the right we would have went off the overpass and into the water. What makes it worse though is that the YUKON truck took off! Despite all the witness seeing the accident and trying to get the license plate number, he got away. In addition, the car that was in front of us that we hit ended up having no license or insurance. What a day that was.
Between all three cars, our car was the worst perhaps because we were the car in the middle of the sandwich. The whole car had to be totaled because the airbags went off, the car is crumbled with the engine being all twisted, and the hood is in the driver’s seat. The frame of the car is even cracked. They even said on the scene of the accident that the car was “totaled!” It is really horrible.
I was also the one that was hurt the worst perhaps because I am the most fragile and weak. However, there was no treatment that could really be done because with my illness, there are very limited things that can be done. What really stinks though is that my disease makes me extremely hypersensitive so a simple needlestick is like someone sticking a knife through me. So the pain that I am receiving from this accident is astronomical because a normal person would be in tons of pain from it… so you can imagine how much worse I am. In fact, as the days go on, I am feeling worse and worse throughout my body instead of actually getting better. I know it is somewhat normal for this to happen, but my disease doesn’t help this. My disease literally spreads through trauma and will cause complete chaos if something occurs in my body… especially a traumatic even like this!
I am in so much pain from the accident despite all the medications that I am already on. I am already on Methadone, morphine, Dilaudid, Motrin, ketamine, etc. … So if I am in this much pain with all these drugs, I don’t want to feel what I would really be feeling without them. I am surprised my stomach hasn’t exploded yet because I have been living on Motrin, which is something that I am not supposed to really have, as the doctors rather me have Tylenol instead. My ribs ache and they think I severely bruised and fractured my sternum and ribs. My heart hurts and my ribs hurt to breathe as well. As I constantly aspirate and can’t breathe, you can imagine how much pain I am in when I have to go and clear the secretions out of my chest. I just hurt all over.
But hopefully today will be better because I am going for another ketamine coma. Like I said before… ketamine is the only thing that really makes a huge difference. It has the power to stop the pain and even reverse the disease if given a high enough dose. However, I need a dose that is so high that only can be given in Mexico because it isn’t FDA approved. But obviously since I can’t get to Mexico because of the insufficient funds, I have to take what I can get and pray that the lesser amount of ketamine will still make a difference.
Finally, it appears another surgery will be needed for my jaw. A couple of weeks ago I had a severe jaw infection and needed to have surgery on my jaw to remove the infection. During that surgery, the doctor removed not only bone but also three teeth as well because of the infection. However, since I suffer from osteonecrosis, I now found out that I have to undergo another surgery in my jaw ASAP because more of my jaw has died. This really stinks too because more surgery on my jaw means more money out of pocket because it isn’t covered under insurance, which is definitely something we can’t afford. I have been having such difficulty with this jaw surgery ever since I have had it, both with the recovery, pain, eating, etc., that I have already told the doctors that if I knew how bad it was going to be… I would never have had it even though it was so desperately needed.
Everything is just dying and giving out on me in my body…. From organs to bones to everything else. My body has always the ENERGIZER BUNNY who has “kept going and going,” but it no longer can do such a thing. My batteries are dying and they aren’t being recharged.
I desperately need help and help soon. In the meantime, all I can do is hope and pray that I will receive the necessary funds and donations so that I can receive the desperate treatment that I need. I just want my life back and just want my suffering to end already. I can’t take this anymore and I can’t do it much longer either.
On a better note, my parents’ anniversary is approaching. On October 19th, my parents will be celebrating their 39th anniversary. I wish I could do something special for them because they certainly deserve it. I am so fortunate to have such loving parents. Some couples are cute together. Others complete one another. But rarely do you have the privilege of seeing two people who seem so perfectly well suited for one another than my parents. I only wish I could make it better for them. For many years, my parents both have always cherished one another with every passing moment (whether they were good or bad). I only hope that this anniversary brings many more, and turn into endless joy of love, laughter, and peace. I cannot begin to describe how blessed I am to have amazing parents in my life. Seeing true love through them makes my heart happy. I love them both in more ways than I can ever tell them.
I am also counting down the days until Tuesday because my favorite author of all times is releasing her newest book. I just love Sophie Kinsella and she is releasing it then. Too bad she only releases one or two at the most a year. She really writes light, funny, and great reads!!
Well… I really must be going because I am leaving for the hospital. It is just another Wednesday, as Wednesdays are filled with ketamine comas. Fridays are always filled with the colon surgery because they need to desperately clean out my colon because my entire GI system is dead and nothing moves. The doctors are afraid of me going into sepsis or something because the medication and whatever food is in me just sits in me and “rots.” So… I have no other choice but to be cleaned out every Friday. In fact, when I go into the OR for the surgery, the doctor always makes me state my name and why I am there and what type of procedure I am having. I always tell him “housekeeping” because that is basically what we are doing!! We are cleaning me up!
Well… thanks again for all your support and encouragement. If it weren’t for your support, I would have never made it this far. Please continue to pray for me. If you have any ideas in how to raise funds, please don’t hesitate to Facebook me or email me at Femirsky@gmail.com.
Thanks again for everything.