Well… Not a good night so I figured that I would update you on all that is going on because so much has happened lately and I also figured perhaps it might help pass the time and keep my mind off this excruciating pain. I have tried so much medication to try to relieve the pain tonight, but nothing has worked. The pain has gotten so bad that I am literally taking all the medications that I possibly can and nothing is working. The doctors have even raised my medications to try to relieve some of the pain and yet, nothing is working.
The pain is the worst pain that you can imagine. I never had pain that was as bad as this. As much as I thought the pain couldn’t have gotten any worse before, believe me… it somehow has managed. I can’t believe how bad it has gotten. I really don’t know how much more of this I can tolerate especially when I don’t even get a second to take a breath from it. I like how when I go to the doctor and they ask me “does anything make it better?” and “does anything make it worse?” What an easy question for that to answer. Everything in the world… and I mean EVERYTHING makes it worse! There is nothing in the world… not even the simples thing such as resting, taking meds, or raising my legs that will make it better. I just wish there was this one thing that would give me even the briefest relief. I am literally climbing the walls!
The doctors have been trying to work with me the best that they can because they know how badly that I am suffering. However, they have really exhausted all their capabilities and they can’t really draw blood out of a stone. You know? They have really given me all the medications that exist in the world, and I am even taking medications that aren’t even FDA- approved and I have to get overseas and such… which are not cheap may I add because they are not covered by insurance. Yet, we are so desperate that we are willing to do anything. That is why we are willing to go to Mexico. Mexico Is the only place that holds the “cure” to my illness, as I need a dose of Ketamine that is not FDA-approved within the United States. Even though I do undergo ketamine infusions/comas in the United States, it is nothing compared to the radical coma that I need in Mexico. In Mexico, I will be the 38th patient to undergo this Coma in the world. Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries like Mexico. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.
I desperately need to get to Mexico and get to Mexico fast because I am deteriorating extremely rapidly. I am also suffering immensely. However, the cost of this treatment that will save my life will cost me over $100,000 and of course we cannot afford it ourselves. That is why we desperately need your help and the help of others. Without the necessary funds, I cannot get the lifesaving help that I need and I am forced to only suffer further, deteriorate further, and as a result, I will die. The doctors say that I am a “ticking time bomb that’s basically ready to detonate.” I really need help and help NOW.
In the meantime though, the doctors are trying to help me cope and make it through this. They have raised all my medications as much as they can. They have recently raised my ketamine medication to 300 mg. I take so much medication that it can literally kill a horse. It is amazing how much medication that I take because people that are like 300 lbs. would never be able to survive this amount whereas I am only weighing in the 60s and I am on such a heavy dose of meds that include Ketamine, Methadone, Dilaudid, Morphine, etc. My house looks like a pharmacy with all the medications that I take, as I take over 50 pills daily.
I just had an emergency appointment at the hospital because my legs look worse than ever and they are not only killing and freaking me out, but they are freaking my dad out as well. You know things are bad when my dad looks at my legs and even he says that they are the “worse” they have ever looked and that the legs are even “freaking” him out. My legs especially are swelling up with pitted edema, my body is on fire, I am changing colors like crazy, I am aspirating, etc.
We didn’t know what to make of it such as if it was because of illness, if it was because of my heart failing, a blood clot, etc. So I called my vascular surgeon and he wanted to see me at the hospital immediately. After all, it could be extremely life-threatening especially if it was attributed to my heart failing or even a blood clot such as being Deep Vein Thrombosis. So the doctor literally met us first thing this morning to see what was happening.
Dad and I of course went to the hospital today to meet the doctor and we didn’t get such great news. Then again… when do we? The doctor knows something is definitely wrong and therefore is sending me for a CT scan on Monday because that is the first appointment that they had. However, he told me that if anything should worsen or if I should feel worse in the upcoming days then that I should go to the ER immediately. He told me that even though he knows that I am a martyr and I don’t really run to the doctor/hospital for things, he told me that even if I feel even a tad bit worse that I should come in or call him because we don’t know yet for sure exactly what is going on and it can be a matter of life and death. He told me that if I went to the ER that I wouldn’t have to wait, as I should just tell them that I was a patient of his. He also told me that I should call his office if anything was of question, and they would have him “paged” even though he usually doesn’t receive them especially on the weekends. It was extremely hard to examine me and to find out exactly what was wrong because of my overall illness. With my Reflex Sympathetic Dystrophy and Autonomic Dysfunction, it is so severe that things don’t present themselves like they should. In addition, I am so hypersensitive that I can barely be touched so it made it extremely difficult for them to touch me to examine me and such.
The doctors also noticed that they couldn’t feel my pulses. That was not a good sign at all either. They are extremely worried that my heart is further deteriorating and failing. The doctors could not get a blood pressure reading at all. My blood pressure is usually very low, as it is usually 80/60 but today they couldn’t even get a reading at all. In addition, when the doctors went to feel my pulses in my wrist and ankles, they were barely able to be felt. I have been feeling so weak lately and therefore, it is kinda no surprise that my pulses were not so strong.
The doctor is also worried that my proteins are spilling out and that is why I am suffering from severe edema. Low protein levels in the blood caused by malnutrition, kidney and liver disease can cause edema. The proteins help to hold salt and water inside the blood vessels so fluid does not leak out into the tissues. If a blood protein, called albumin, gets too low, fluid is retained and edema occurs, especially in the feet, ankles and lower legs. They think it is due to the severe Gastroparesis that I have and because my entire GI tract is shutting down.
That is why I desperately need to get to Mexico. With everything happening between my proteins spilling out because of my failed GI tract to the edema to the pain in my legs to the severe autonomic dysfunction to my neurological condition worsening to everything else… I really need to get to Mexico ASAP. So… I am really hoping that there will be a way to somehow get there. I am really running out of options, as I have exhausted almost everything that I can think of how to raise the needed funds. Without the money, of course there is no way that we can go and of course we cannot afford it by ourselves. That is why I am pleading and begging for help. I am so scared because I know that my life literally rests in the hands of the rest of the world. I am hoping and hoping that I will be able to get the necessary donations so that I can receive the necessary lifesaving treatment, but unfortunately it hasn’t been happening. I have gotten a few donations that I am extremely appreciative for and thankful, but it is far from what is needed. My medical treatment is so expensive and from paying for it for years, we can no longer due so. It has gotten to the point that we can’t pay for my medication, appointments, the mortgage, utilities, or even to put food on the table. Even the holidays such as Christmas, Chanukah, Passover, etc., which should have been “happy and celebrative” times have become nonexistent because we cannot afford them anymore. Yet, every dollar does make a difference and the donations that I have received (even the smallest of them) has really made a drastic impact because it has helped with even the simplest things… even if it was to just help pay for a doctor’s appointment or medication.
We are busy making plans for Mexico. Even though we are planning on going to Mexico in July, we really We really need to do something about my severe Gastroparesis in the meantime because my weight is dwindling and I can’t eat anything. The littlest things that I was able to eat before such as the egg whites and ice-cream are now even getting too much to bear. My GI tract is just completely shutting down and we already know that I am in need of a multi visceral transplant, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver. We can never catch a break. We are supposed to be leaving May 13th, and I just hope that we have the funds available because I desperately need to go. It’s a shame that there isn’t anyone local that can help me and all my “great” doctors and treatments are across the nation such as in Mexico and in California. Not only does it cost us more because we have to travel, but it also takes a toll on my body because the traveling definitely isn’t easy on me.
Well… I guess that is about it. I have bloods in a few hours because they are not only needed for the upcoming CT scan on Monday, which I am having to further diagnose what is happening in my legs and to find out exactly why they are swollen, on fire, etc., but to also recheck my bloods because my bloods came back last time extremely horrendous. I am really nervous because they came back last time so critically low that if they drop anymore… I am extremely fearful that I am going to have no choice but to end up in the hospital. So we will see.
I have been trying to keep my spirits alive and trying to keep myself going as much as possible even though it has been hard. I try to still keep myself as “normal” as possible so to try to get past all this horrible stuff that is happening and to take my mind off of it as well. I have been busy snapping pictures of my pets, which have become my best and only friends because not only are they there to comfort me and ‘babysit’ me throughout the day and night, but I really don’t have a social life anymore. You really learn who your true friends/family are when you get sick.
Speaking of my pets… I can’t believe that my cat’s birthday is coming up next week. She is going to be 9. She is basically my life and if I didn’t have her… I would be at a loss. When we first brought her home, I made my mom bring her back as soon as we brought her into the house because she fell down the stairs and I got nervous. I thought I was not deserving of her and was not going to be a good “mom” to her. Yet, no sooner did my mom bring her back, but my mom realized how much I loved the cat and wanted it and therefore, she ended up going back to the vet to pick the cat up again. However, Missy will never let us forget about how when she was back on the way home that she caused my mom to hit the car into the house because she was an inquisitive cat that kept poking her head out of the box. My mom was so afraid of her getting out of the box, as she kept poking out, that when she got into the driveway my mom ended up hitting right into the house! Can you believe that? But all and all… I am so glad that Missy is here because she has been nothing but a treasure to have. She is the best gift I could have ever had because she takes such good care of me. She constantly stays with me and we spend countless nights awake together. Not only does she always make sure that I am OK, but she loves to go on the computer with me. Not only does she watch me and she is like my babysitter, but she does the same thing with my turtle. My turtle and her are the best of friends as they always stay together then I take my George (my turtle) out and she stays on his cage when he is inside.
I have been trying to keep my spirits alive and trying to keep myself going as much as possible even though it has been hard. I try to still keep myself as “normal” as possible so to try to get past all this horrible stuff that is happening and to take my mind off of it as well. I have been busy snapping pictures of my pets, which have become my best and only friends because not only are they there to comfort me and ‘babysit’ me throughout the day and night, but I really don’t have a social life anymore. You really learn who your true friends/family are when you get sick. I also been watching some TV and getting into the “old timer” shows. I have been enjoying shows that were existent before my time like WONDERWOMAN, the original BATMAN, GILLIGAN ISLAND, etc. I also have been trying to do some reading, which is extremely difficult for me, as it is very hard for me to retain what I am reading. It really bothers me that I am having this problem because I used to have the best memory, as I had photographic memory. But I am determined to finish another book like I did last time. So I am reading James Patterson’s book called FIRST LOVE.
I have also been doing a lot of dreaming lately and wondering what it would be like to get “well!” I keep picturing my life when I am all better and planning all the wonderful things that I am going to be doing. I plan on resuming my studies and becoming that doctor, having a family with kids, having a social life, etc. I also plan on traveling, as my family hasn’t been on a vacation in over 10 years. I also have been planning on going shopping because I haven’t really enjoyed that in a while and of course when I get better I am going to need to go for a huge shopping spree, as I am going to have no clothes to wear because I am going to be so much fatter and I will of course need shoes since I will be able to finally be able to wear 2 shoes. Due to my illness, I am a mere skeleton and the clothes that I have now will no way fit me when I am better. I also cannot wear a sock or shoe on my left foot because of the illness because I am in so much pain and I am too hypersensitive. So… I really can’t wait to be able to go shoe shopping because all I have been able to really wear is one shoe and it had to be something simple as a sneaker since you are really limited what you can wear since I needed to use crutches and you can’t use crutches on heals or anything of that sought. What girl likes just wearing sneakers? LOL!!
I also have been picturing my life going out to eat and even being able to eat. It is amazing how much this disease has taken from me. People don’t really realize that when you have your health, you really have everything.
Well…I guess I will write again when I have more info. Thanks again for all your support and encouragement. I can’t tell you how much I appreciate it. I definitely would not have made it this far and long without it.