Let me explain right away in case other people are actually reading these articles and mini libraries of information under the "Carmela and Mastocytosis" heading.
I am writing as notes to myself and as a patient seeking answers in my own condition that the doctors determined a long time ago as "terminal" and "incurable" and sent me home to die. These are my attempts at being as pro-active in my own health care as is reasonable and ensuring my own quality of life. In no way am I seeking to treat myself alone (aka without doctors assistance.). The information on my website, especially the medical information, is for information sake only and to be used to discuss with medical practitioners.
Turning Back Time
As a child there were foods that I loved and ate that later made my stomach ache. Foods like chicken and ice cream. We did not know about lactose intolerance then and did not know about eating for one's body type. I still enjoy these foods but in moderation. Like as in almost never but once in a blue moon or holiday or special occasion. So skip to 1990-1991 having and being treated for cancer of the ovaries, uterus and cervix along with endometriosis did a number of me. I could not eat anything that I knew to eat. The owners of the Chinese restaurant that I managed would go to New York twice a month (sometimes up to twice a week) and bring me back items to eat. They kept me alive on what I have since learned is called the "anti-radiation diet, the diet that people ate in Japan after the bombings of WW2. I stayed on this diet and became not a complete vegetarian but primarily well into my married life. Until my then husband did not like the
attention other men gave to me and so he took over the menu planning which was mainly meat and rice and meat and potatoes. There was a whole year that we went without fruits and vegetables except for apples and bananas. This nearly killed me. My blood became toxic and I gained so much weight. Mostly water weight. I ate so much banana that I am now allergic to them and to latex. I used to use mashed bananas to make ice cream. I still recommend this for children. As in all things moderation is necessary tho. Then about a year or so later in 2000, when I found myself homeless, those several months the weight came off very quickly because I was drinking a lot of water and ate a lot more fruits and vegetables than the year or so prior. The male attention came back and my then husband did not like it then either even though we were not together and he had another lover (who by the way at the time from the back and from far away was a very good stand in for me. We looked that much alike, people got us mixed up, even people well familiar with the both of us.)
So also during this time, I developed hives with breathing problems. I did have hives before from stress the doctor said. Actual worry warts the doctor said. But I learned that there was no such thing. That it is HPV that lives in everyone but stress can bring them about and I was in a stressful strange situation each time the hives came out. The first time my ex husband had all four of us, my two children and the both of us living with another couple. I never did fully understand the situation. I just knew it was taking a toll on my sons and I and as soon as I could get the boys and I safely away, I did and the hives cleared on their own. The second time with the hives breathing problems also occurred and this too was stress related as now my ex had another woman in our home that he was living with and demanded our children to call her mom. It took a while before we (the doctor and I) came to find the combination of meds and stress reducing techniques that helped.
It was also during this time that I became the shelter director and so then traveling was part of my job. I found myself in Emergency Rooms across the country and not knowing why I was passing out. Sometimes to my horror learning that I had been there for days even weeks. And when I followed up with my doctor it seemed at first to be fatigue. Later, I was having reactions to things I ate, perfume, cleaning supplies. Things that did not bother me before were sending me to the ER. So then my doctor had the skin prick test done. What showed up as my allergies: grass, dogs, cats, dust, pollen, ciggarrette smoke. The test resulted in my being hospitalized for two weeks and on life support. But it was so much more that was sending me to the ER and we could not figure out why. I also noticed when I fasted coffee, chocolate, chicken and ice cream during times of intense prayer, I felt so much better and had more energy. I could even leave alone the meds. Eventually the craving for chocolate and coffee would come back and then again later the chicken and ice cream. I was run down but not to the hospital stage. Other things were sending me to the hospital. I logged them down. And found out in the city there was no getting away from them.
I went to my home town to visit and my grandfather made homemade lasagna. The sausage home made. The sauce home made. The noodles the cheeses all home made and my favorite. "How is it?", he asked. "To die for!" I replied. Turns out a few hours later. I did. A slow painful death. My mom watched. I still some how was able to make it to the Med Express to hit the ambulance button. Shit too much of my life is some horror movie! At any rate that is the first time the world "Anaphylaxis" was ascribed to my case. And I was told I was to avoid Italian food. I had a nervous break down in the grocery store as I did not know what to eat and felt so scared and overwhelmed. I called my mom at work, Yes the same who watched me die. She calmed me down and told me to go outside. I went outside the store hung up the phone calmed down. Regrouped. Went back in purchased an apple, some chocolate, some deli soup and a drink. Went to the park and ate while I read a book. Ate the soup for dinner at home.
I am skipping and fast forwarding a lot as to hit the highlights of the reaction times themselves and the highlights learned if any during that time.
So now 2006, I am in the hurricane Katrina zone and the list of strange allergies is growing even though what is showing up in tests is the same as the usual five and each time the test sends me to the ER with hospitalization. Once I reacted to temperature change. Ambulance needed called. I was waiting for a taxi to go from one job as cashier at Lowe's to car hop/waitress at Sonic but needed hospitalized instead. The doctor treating me asked me if I ever had rheumatic fever and I said yes. He said there were still markers in my blood from it. He wanted to speak to my mother. So I called her. He asked her why she never had my rheumatic fever treated. She got all defensive and cussed him out. Then she asked me why he asked her that. I asked him why. He said he was a leading expert on rheumatic fever and has written books. Was a teaching doctor. He said her neglect of me as a child added to the health concerns and issues that I was dealing with then. It was true she had rheumatic fever as a child and survived it. I and one of my younger siblings had rheumatic fever and my sibling was treated while I was not.
After the break up with my fiance', and the brief time I was held against my will at this couple's house, the reactions became more often, more intense, lasting longer. My oxygen sometimes was low as 54. Once I stumbled into the ER with oxygen saturation of 37. No one knew how I was alive and working. At that time, basically, I was sleeping at the ER. Eating at work, going home to pick up mail. Only had an address to show stability. I would some how manage to walk to work when I had time for nearly zero funds. Other times I would take the taxi but got to the point that I was allergic to the taxi. So then I found two people who needed money. I paid them to take me places that I needed to get to. I paid them extra to fan out their cars to make sure the smoke smell was out of it before I got in the car and to not smoke during long drives. The actual smoker eventually quit smoking.
Going Back to Cali - I don't think so!
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So in 2008, was to head back to Cali to give report for financing ministry work along the Gulf Coast and instead had an allergic reaction to aspirin at a dinner party way after the dinner party was over. Friends threw me the party to send me off. It was also a shared event with another person they wanted to honor. Any way, I died a clinical death as a result and came back to life about eight hours later. A lot transpired from the time they scanned my organs and harvest my tendons and leg muscles to when I was sent home.
But it was the first time I learned of the term "Idiopathic Anaphylaxis". Which meant I was allergic to every thing and no one would know what set me off. I was given a list of terms to research on my own once I got home. I also learned that this is what my body had been dealing with up to that point for years according to that team of doctors. They gave me my medical records to read but not to take home. They also said I would need a five organ transplant. They were chomping at the bit to do that but I believed God said no and so I did not. Instead, within a year of eating primarily fruits and veggies, I was able to heal the damaged tissues in those organs. Only my lungs were the most reluctant to heal up. I also learned as a result of that hospitalization by way of reading my medical records and what the doctors shared with me, that my body had died and been in comas many times and that my spirit had crossed over and I did not even know it. That info was very difficult to deal with. But I forced myself to look up all the terms the doctors gave to me. Wrote down all the questions that I had and started my medical journaling process.
So after a time with convalescing at my friends' homes in exchange for teaching their children Spanish, and at two Hari Krsna Ashrams (farms/temples), I was strong enough to make a long trip back up to Pennsylvania upon doctors' orders "To get my house in order and make my last wishes known." This was in 2009. I wasn't back even two weeks and I died from my cycle (a typical anaphylactic situation that I hoped to never experience but did.) and when they brought me back, they told me that I had pneumonia. So I was treated for pneumonia. They did not know why I had died but I did because I had already done the research as per the doctors on the Gulf Coast. While being treated for pneumonia, my mother got an application for me for public assistance and filled it out so all I had to do was read it and sign. I ended up filling out another one because she got so much info wrong and some she flat out lied. Later she told me she wanted a fee once I was approved because she got the ball rolling. Same woman is now director of CPS and DPS is my home town and tri county area. Another side note when the hospital was discharging me they thought they were doing to treat me for pneumonia then send me home by ambulance or taxi to wait outside in the winter cold in a hospital gown while I waited for my grandfather and mother to come home. I most certainly glued my ass to the hospital bed until I had a ride home and knew someone was going to be opening the door to welcome me in.
Two weeks later, I died. This time due to ingesting Alieve which I now know because of that episode that it is a form of aspirin. If one is allergic to aspirin one is to stay away from all forms of aspirin including willow bark. I had a headache and my mom gave me Alieve. Later she admitted to me that she gave it to me to prove to herself and to me whether I was really as sick as I said I was and if allergies could really get that bad. Really?! WTF I already had died two weeks prior. It was some time later that another relative had informed me that my mom was on the mafia pay roll to kill me. She wouldn't be the first or last parent that the mafia contracted to kill their own kid.
Went to go rent from a friend of mine; we knew each other as far back as elementary school although I remember her more clearly in middle school (I have time lapses and blank outs of time). I was thankful that she was renting to me but her son and his friends omg! Anything they could to trigger my allergies they did and would laugh when the ambulance came. Winter specifically Christmas vacation I prayed to be hospitalized because I was actually doing pretty good. Then yes, my cycle and some torments from the kids involving cats, and areosols landded me in the hospital for about two weeks. The Christmas break. On December 24, 2010, I watched C-span and Congress make it illegal to grow gardens (which thankfully not even Michelle Obama obeyed that law).
I got well enough to go help a family in Arkansas, the wife had cancer and needed emergency surgery and wanted me there. So I went and helped. Came back to PA, this time to visit Papa who was now in a better frame of mind, needed help as mom had moved out. So from 2011-Spring of 2012, I stayed with Papa paying the bills so no one could accuse me of taking advantage of him. I also did all the cooking so that we could eat healthy and I did not have to worry about anyone giving me anything that I could not eat. Papa's doctor had called me to congratulate me on Papa's health improving and also informed me that my aunts were trying to get elderly social service reports against me because Papa was suffering a bit of a healing crisis but the aunts were convinced that I was doing something wrong to Papa. Thankfully I kept everything documented. Even my aunts coming to visit and what we ate that I knew of and so on. Social workers came and Papa usually was not home but visiting Gramm. That there told them that Papa was doing good because Papa was the one driving back and forth on his own. After the fourth social worker came to follow up on my aunts' calls, I was told that no other social worker would be "visiting" and my aunts were in trouble for false reporting. That was a good outcome. I had so much stress there. My hair fell out and I was taking allergy and breathing meds all day long because I was stressed. Stress is another thing that sets off anaphylactic symptoms. I did not have to got to the hospital but went to the med express/er a couple of times because my aunts stressed me out so much. Of course my mother was not much help either. I did get well enough to travel again.
Some incidents happened that I am going to skip over, but eventually in 2012, I made it back to California. Went back to street preaching in Skid Row. This was very difficult on my body. Allergies were always on high flare ups. Anaphylaxis constant threat like an avalanche. Kidney pain almost every day but when I was able to do I over did it to make up for the days I could not. Then in 2013, I moved to Burbank, and that move was a big huge mistake. Quite stressed many near deaths while traveling and the young lady I rented from could care less about any of it. Happily I moved to Montana in 2014. I still had to travel back and forth to Los Angeles because my finances were affected by the Target scandal/mess and had to keep going back and forth until the mess was straightened out. During one return trip back to Montana, I ended up in the Utah hospital. The doctor gave me my blood work and told me that he thought I had Mastocytosis; that I had all the markers for it. He said that anaphylaxis, was a symptom and so was SIRS which I had just been diagnosed by another doctor shortly prior in a Burbank hospital. He said I would need to be quarantined, tested and need a bone marrow transplant. I said no, because I was on my way to Montana and explained to him my financial situation. He agreed things as they were it was not a good time for the procedures. He told me that I owed it to myself to write my incidents down as a lot of people could learn from them and from what I have been doing to have some quality of life. I did really well in Montana. Was there until September of 2014, then I went back to PA to get my belongings. Papa died while I was there. I got to say good bye. I also cut ties with my mom. My health has improved even more ever since.
So upon coming back from getting my things in PA and saying good bye to Papa (as well as cutting ties with mom), I went back to California with the intent of giving training to the staff of nursing homes concerning GPTSD. Nurse Carol and I of the Long Beach nursing home had been discussing this for a while. When I got back to meet with her the first night she told me it was no longer just her staff but she had arranged for me to give the training to 40 nursing homes within the Los Angeles County. We just needed to set up day, time and registration. So I was so keyed up that I went to the restaurant that I know is open all night and penned down all my thoughts on how to proceed. While I was there, I was confronted by a guy who told me that he was there to kill me. I told him that I was too busy. And my attitude surprised him. We ended up having a nice visit. Confrontational with some push back but not unpleasant either. I had only been in town one day and one night and already I was being "sent a message". I will write more about this incident on its own later. I make mention of it because the guy asked me why I drank so much coffee and in the course of the long conversation that lasted nearly four hours, saw that I took medicines twice and asked me about that too. I explained to him about Mastocytosis and it being terminal and in my view a type of cancer according to what the Utah doctors informed me about my cells and bone marrow. He now felt awkward and guilty about being sent to kill a woman who was already "sentenced to die". And the conversation got into spiritulity and faith and then he asked me to pray for his niece who was at a college that had a shooting that day. He ended up leaving and I finished my work. I went to the hotel to sleep. Then went to the nursing home for the second meeting with nurse Carol. After the meeting, I visited with my mentor who resides there. Upon dinner time, as I stood to get up, I had an anaphylactic attack and I think it was exhaustion still both mentally and physically. An ambulance was called.
At the hospital, in the ER they took my anti-histamines away and would not administer them to me on schedule. I nearly died in the ER then they put my in a regular room and still would not administer the medicines on the proper schedule for me. As a matter of fact I was not to get any medicine until the doctor okayed it and they could not find him. I was terrified. And they put me in a room with a roommate. That usually would be bad for me but in this case my roommate saved my life. The next day, I was gurgling in my sleep and did not know it. I thought I was talking. I actually thought I was having a conversation with her until I woke up more clearer and could hear her shouting in the halls about me. Then I noticed I could not move. The nurse came to check on me and was not sure she even found a pulse and called resparatory stat. and the respatory therapist still took a long time to come, but the time she came I was more awake, able to sit up and fighting for every breath. She saw me and said that I did not look like I needed a treatment. I had paper and pen and wrote her a note to give me the damn medicine (I still have that note) I was using a rescue in haler that I had managed to keep hidden from the ER staff the day before. After I was stablized from breakfast to lunch time, I met with each administrator and the head of nursing who were assigned to my care and explained to them that I would report the hospital unless all my meds were returned to me or that they at least gave me the equivalent on the proper schedule and that all my fees for the hospital stay would be waved or I would call the news. They could decide to either agree with what I was asking or face a law suit. I also informed them that I was a standarized patient (it kind of means something different now than it used to) and that I could grade hospitals. They were up for a merger. I called in and later after release from the hospital wrote my report and no they did not merge with the larger hospital or rather the larger hospital did not merge with them. As reltaliation they sent in a psyche nurse to do my processing of release. She kept assessing me. I chased her out and called in the head of nursing and an admin and told them I knew what they were doing and they definitely were not getting the merger if I could help it. The psyche nurse kept popping in told me a taxi was called and arrangements were made for my release and I told her I had a ride and I had a place to stay (I made arrangements at the hotel I was staying a few nights before). She kept acting like I was making things up and was indiginent. So when my ride came she exclaimed, "Oh, you ARE real." My ride was confused until I explained. Then I explained that I had accommodations at the hotel I was staying the previous few nights until the hospitalization. My ride then in returned invited me to stay at their home. Originally, I was to stay two weeks. After two weeks, the family asked me to stay until I was well or to use their home as a home base. This was November of 2014, the week of Thanksgiving.
January of 2015, I had a ER visit with a short hospital stay from my cycle. February the same. June or July of 2015, I reacted to fires and had a weekend of many ER visits until I instisted on being hospitalized. After that I went to Indiana to escape breathing the fire smoke. In September, I had reaction to my cycle and suffered a heart attack and stroke that cost me a paid radio gig and nearly cost me my life. Someone we deduced was from Massad making good on a contract. And the other unnerving thing was that I was transported to another hospital and the transporting nurse was a former muslim who knew about the fatwahs against me. Between that and the one doctor wanting to take out my kidney then later saying I was going to need to at least have a procedure or surgery and then being discharged from the other hospital with Ecoli! of all things! Sent home on a pic line inserted in my arm and given IV anti-biotics at home, I made a vow to myself not to go to the shop ever again!!!! So far that has been working. I haven't gone back to the hospital since September of 2015. I came close and should have probably in many instances, but toughed it out. And made as many life changes as I could. Even found some creative solutions online. So now in 2017, I am traveling again.
We did try to have me go back to Skid Row but the air quality of more DTLA and industrial, higher population areas, I cannot take. My skin and mucous layers from my ears to my whole digestive tract break out in hives and sometimes blisters. Itchy, painful, burning. The recent California fires chased me out of California in October. I went to visit friends along the Gulf Coast. Was a good visit and added bonus was spa like sports medicine type treatment just about every day for several weeks. I will write about this in the next post so I can do it better justice. I was actually able to walk outside in the grass! and for several hours. Being around people was still a problem (people tend to equal chemicals. it is amazing how many chemicals people wear.), I react to the chemical residue they have on them from their hygiene routine to whatever else they were exposed to. I react similarly to out door animals. In door animals I still react to but as long as I keep my hands washed and my meds on schedule reactions are under control.
So the plan is after I finish along the Gulf Coast, that I go up to the Pacific North west, then down to Puerto Rico. Time frame is not specific. Right now resting during this working vacation and gathering resources for Puerto Rico are the main priorities. Water, gardens, indigineous plants, and sustainable energy resources are Once Upon an Eden's priorties, including natural health care remedies that the people can make themselves. We are working on getting people hurricane ready for next season. All of this will be explained further in its own article. For now this is where I am in ministry and health.
In the next article, I will write what spa/sports medicine treatments I have gotten a few weeks ago, October 2017, the research I did in that time and what I learned about my case and my new course of action. Then after that I will write a series of articles explaining Mastocytosis a bit more and what I have learned about the body, the immune system and see where that takes us. I may even give some examples of when this knowledge was applied to cases that I helped with (I already have the people's permission to do so. Names remain changed to protect their privacy.) Hopefully this will help so that people will have a clearer understanding of some of my own challenges and will be helped with their own and also have a clearer understanding how my own personal life is used in the work of Once Upon an Eden or rather that Once Upon an Eden is reflective of my own self care and interests and why I do what i do. Holding thumbs and fingers crossed on that.
Possible Next Protocol of Medical Treatment
1. Chiropractor -Get Back aligned right
2. Gersen Hothouse Treatment
3. Canabis oil-still not sure about
4. Possible IV treatments for dehydration
5. Blood cell, bone marrow, stem cell re-education (-this also includes issues of thyroid *blood cells are "educated" through the thyroid.)
2. Gersen Hothouse Treatment
3. Canabis oil-still not sure about
4. Possible IV treatments for dehydration
5. Blood cell, bone marrow, stem cell re-education (-this also includes issues of thyroid *blood cells are "educated" through the thyroid.)