I am Not My Illness
Living until the Angels sing over me !
There are quite a few luekemia's. The form I have is not listed in any medical book as of yet. However after my last surgury I signed papers for research to be done. The type I have is within My basophils. Most people do not have any basophils but if they do ,generally only a few percent. . On a great and glorious day.....my basophil count is at 20 percent and much higher during allergic reactions.
As of 2007 I was diagnosed with a form of mastocytosis(urticaria pigmentosa). I felt and still do, that I have systemic mastocytosis because I hold all the symptoms and organ involvement. My doctors and their test have baffled themselves and me and because of the basophil involvement it is considered a new type of luekemia.
Dating back to early childhood for me, I was so allergic to so much. The prick test at age 5 was a horrible memory for me as they strapped me to the table and used a razor to slash 100 scratches upon my back. That test concluded I was allergic to 99 out of 100 things. Even including the allergy medications that were given. A small town doctor and pharmacist came up with a concoction that I could take, not that it alleviated much for me.
My mom kept the home extremely clean and it was much appreciated ...even then.. for I could go in others home and the dust and lack of OCD type cleaning was very noticable for me. Food allergies did not become an issue for me until age 40 and started with shellfish.
By the time I was 13 years old I was outgrowing the terrible nausea and massive amounts of phlem from my head and took notice to how much better I felt daily. My life was becoming better. However I never let my illness stop any day of fun, it was simply fun with symptoms. Now I really could go out and play and visit others in their homes without the sickly aspect.
During my twenties I had a few bouts with blood infections, each time they would share with me that I had leukemia , only to come back after more testing to declare they have no idea what was in my blood but seems to be gone now and to feel blessed. Ofcourse I did, I had to work and have a life.
By age 30 and after my second child, it was clear to me that my allergies were back double fold and I had to give away our pets. It was one auto-immune issue after another as well. Bleeding ulcers, swollen joints , more heart issues, liver and pancreas dysfunction ......finally by age 40 I had diabetes and cirrhosis of the liver.
Even with all the blood test and biopsies, all the severe allergic reactions that would cause throat and tongue swelling, blisters on face and sunburned almost all over, because some doctors could not find it in my blood work , they would advise me the see a therapist. I so agreed by after 10 or more years of actively searching for help and answers. The therapist's deemed me sane, infact several asked how I managed to have such a good attitude. In their defense , the doctors did not know to look at my basophils. However it is a great lesson for them , if only they will see any lesson learned.
I do however appreciate the research that was done. Now it is written that too high of basophils cause my symptoms. Which are medium to severe allergic reactions to....well almost everything one could be allergic too. Foods (all fish, nuts, eggs, most oils) Chemicals and your normal airborne allergies( animal dander, grass, ragweed, pollen trees mold)
From what I am told I was born with this, it just has become so much worse over the years. As I become older my immune system is weakened by this type autoimmune illness. My mom and grandmother have/had systemic Lupus and this is very much the same. As the basophils are so high in my body. It eats away at all my major organs. Leaving with M.S and Parkinson's type symptoms. I rarely can go out to eat or shop, as the mold is confined to the inside and most don't use a return filter worth anything. The cheap ones barely catch a dust bunny much less small invisible mold spores.
I speak out much on air quality because people truly don't seem to understand what they can't see .....can very well harm them and their children, elders and pets. We are seeing more and more severe asthma and allergy sufferers, More diagnosis of Chemical Sensitivities and fibromyalgia.
A person to be so fortunate to be born with a healthy immune system can and will still be affected (as a baby and small child) To the food additives ( that are many times harsh chemicals) to mold spores in the home and schools, also to the strong chemicals in bug spray, cleaning supplies, paint fumes, exhaust and air outside. Thus a small immune system will not have the fair chance to grow into a healthy one. Showing signs of runny nose and watery eyes before allergies are even suppose to rear its ugly head.
If one could be so lucky to escape an early double dose of chemical and mold warfare( over 200000 types of mold) , never fear it will hit at these old schools and your work place. Most are not going to spend the money on renovations and a great air return filter($18) and last 3 months. Small price to pay for such a large improvement in air.
Realizing I am not the norm and I deal with anaphylaxis daily. What I notice that makes me worse also makes others worse. I have found that I am not my illness but it certainly dictates to me where I can go and with whom I can sit close. When I describe how I must live ...just to exist.... it blows minds.
When it rains I can't go out, all the rain knocks mold from the trees and adds to the mold in dirt as well. If no sun to dry it up I could be home for a while. When I do go out, I have to check the air quality ( usually hold my breath or use a mask and look at vents to see how clean) (if not using a proper return filter) it is nasty looking as there was nothing to catch the particles ) and then the bathrooms usually have much mold so I can't go in there at all.
My children have to come in an drop clothes and shower just to hug me and then they try to wash the mold from their clothes as best they can. I can't even touch their clothes.....even after washed. Mold attaches to clothes and can't easily be washed out. I live a very sheltered life of not many foods to eat , sleep on airbed, and not many souls can come in to visit as they live in older homes and have pets.
I do not tell of this for sympathy but to offer everyone a chance to build up their immune system so that hopefully one day you or someone you know will not be depleted of their immune system.
Everyone is allergic to mold! It is terrible for you. Black mold is the one we speak of most often. It causes flu like symptoms and worse for frail bodies like children, pets , elderly or ones with immune suppressed illness already. It causes seizures, migraines tremors and more.
Our FDA regulated foods that hold within dyes, chemicals like antifreeze (propylene glycol) BHT (preservative) mono-sodium glutamate(filler with additives that encourage hunger) among so much more that starts a path of destroying our immune system and causes more auto-immune diseases like diabetes .
The high fructose syrup is filled to the brim with pesticides and we only taste the greatness of the food or drink. They now have bug spray which is a pesticide they call eco- friendly because one can't smell it. Ha I say to that .........it still causes me and my small poodle to have seizures and physical symptoms so bad that no one wants to watch. They are only spraying around the doors outside and if they came in with that ...it would surely kill us.
My home thrives on almost no mold, very little chemicals, food that is fresh and not processed with such as mentioned here, purified water( Nestle Pure Life is more purified than others) I wish I could say I am all better because of it but I would be if my illness had not completely knocked my immune system to bare bottom floor. However I can have sunny days with a friend and some laughter and I feel blessed to have those things.
Now let us move straight to health care. Most (other than myself) can speak volumes on how the government has altered the health care. My complaints will more than likely go deeper than any policy or official in the genre of gripes.
I have great health insurance and can't really use it. My allergy medication (Allegra) has been now put in Walmart's across the country. Pharmaceutical companies will not carry it now due to that. I am allergic to the extra ingredients and red dye they put in/on the fexofenadine tablet , forcing me to pay the extra money. I take 3 -5 180 mg tablets per day as prescribed by the few doctors that will even deal with me because of a lawsuit.
My lawsuit was dropped recently toward a major world renowned hospital. It was evident they attempted to create a severe mast cell event ( severe allergic reaction) in efforts to obtain cells from my gall bladder and such for research purposes. As I have been watching the research online, there has been research since 1840 on basophil counts. They had a difficult time finding anyone having enough basophils in the peripheral blood to study.......some of the last research was in 1940 and it was a case with almost 4 % percent basophils..............hardly the 20% I live with daily( on the greatest day) Now as of last year ....Europe holds the medication to deactivate basophils through research started right after my gallbladder surgery in 2009. Probably a coincidence.....hmmmm maybe
To my understanding the chief surgeon was let go ( he performed the surgery) I really am not sure about my masto doc that diagnosed me and hand picked the surgeon...saying to me " you need someone that will understand your illness". She hand typed a personal letter to the anesthesiologist and reported I didn't have mastocytosis and to treat me as a regular patient. The lady doctor(anesthesiologist) showed me the letter and assured me she would take great care of me....and questioned why I thought my masto doctor would write that. Also more questions about why my neurologist had written he felt I had Parkinson's and I would not return to him. My mind being frazzled with that letter and afraid for all my worth.........I stated that he told me I didn't have Parkinson's and not to return. It was a very bizarre day, for I am severely allergic to anesthesia and had been in a coma after a C-section due to it and the mere fact that my diagnosis of mastocytosis was written for all to see .....and now one letter has the potential to kill me.
Before the first gall bladder surgery , the surgeon pulled me outside the guarded curtains and ask me to sign a small stack of papers giving my permission to research whatever was obtained from this procedure.. That was so easy for me as I want to help anyone I can.........everyday. However I truly wish the gowns were more appropriate for such maneuvers in an out of the bed.
After the gall bladder surgery I was put in the hall for many hours, as they said they did not have a room ( for a scheduled event as of this nature). I was then put in a ward with quite a few others. (not that was a problem) Mainly I just did not understand this, when I held fantastic health insurance. The nurses there were also questioning me about why my masto doctor who diagnosed me would retract and send a formal hand typed letter mailed to the anesthesiologist. Even then I felt I knew what was really going on.
The surgery ended by five o'clock and I was in the ward by nine pm. I was anxious and not feeling my best. My daughter was with me and I am certain she would have loved some sleep. However I was afraid to sleep. What could happen next to me ? There was a lady in the cubicle in front of me on her cell phone and sounding very unsettled herself. Yes I longed for rest but there would not be any found in this situation.
A few hours later a nurse came in to give me a shot. I asked what is it? She insisted as she went toward my leg with the huge needle ( needle freak here) That it was doctored ordered. I finally grabbed her arm and with full intentions of taking her down if she moved any closer to me with the shot....I said " What is it"? She stated heparin (blood thinner) I explained (not sweetly) that I release much natural heparin due to my basophils and that I refuse that shot . The test the day before indicated this and was changed to normal when I checked a few months later.This could of been a large issue for me as someone that many times has a hard time clotting and with four incisions from the surgury ...it could of absolutely killed me.
Long Night yes..... I was told I could return home now. It is only 9 am. Realizing I am not the best patient, however it seemed early but I didn't mind , the place was hellish. Ofcourse not before my surgeon (chief surgeon) came in to check on me. WOW I couldn't wait to give him a a few earfuls of my not so sunny side....but he has seen all sides anyway I fiquired this would be the last time he saw anymore or heard anymore sides from me.
He came in to my cubicle and looked not so happy to see me. Worked out fine because had he was acting all happy. It would have been harder to ask him what the hell was going on? A hand typed and mailed letter ?The heparin shot? I said " it looks as though you guys were plotting my demise" . He popped me across the thigh and said " well you lived huh?" Now in the mode of make him feel really bad... I say" no thanks to you and you should really be more careful and you now should watch your back..... starting today.
Famous last words ..... "Last time I would see him" Ha In only a few days I was hurting so badly and turning yellow and itching horribly. Many times I called his office to report the pain and tea colored urine. yellow eyes and skin. The arrogant doctor told me I probably had gas and to get off my couch and walk it out.
After many phone calls to my surgeon and his staff, and three days later, My body was so weak and I knew liver failure when it shows up ...again . My demand was the the surgeon see me or I would go somewhere else and tell of my suspicions of using me for research , as I knew he also headed up the research dept. at this hospital.
He instructed me to come in that day, infact right then. There was no one I knew to take me and realizing I had to battle my illness and this man alone, I asked God if I was up to the task. My answer was...................If not you fighting for you then who? Within that reply I knew I was only stronger because I truly wasn't alone and I did need to fight for me and the rest of the people that may not be able to.
What a moment .............I was seen as quickly as I signed my name. The pompass doctor was not as arrogant as before and told me I needed more bloodwork. At that time I gladly took the needle and was told to go home and wait for the results.
My bags were already packed by the time a call was made from the doctor two hours later. It consisted of my yarn for knitting( as I felt this time I would be there much longer than the 16 hours previous). my animal cracker and water along with a few night gowns. He said I would need another surgury and to meet him on the third floor (surgury floor). No questions were asked by me at that time, for I knew I was not doing well and needed help. Hoping and praying this man would not be so ignorant to try the same on me again.
When I arrived I went to the E.R. only to be told I would have to park my car and go into the main hospital. Oh my were my thoughts ......I can hardly walk and to park in the deck is not possible for me and then walk a half mile to the front doors. Looking back .... this must have been a show from here on out. I went to the front doors, it was jammed packed with valet parking and it was 100 degrees out, only making all my symptoms worse. They finally came to me and asked for seven dollars and I handed them my debit card. The small frame man, hot from the heat seemed disqusted with me, saying "mam we don't take credit cards". Indeed I am sure I am toast soon, but my words to him were" sir I am in liver failure and I need you to take my car" and "it's paid for" "please park it or take it for I will have no use for it soon:. He stopped and stared at me for a moment and said " is there anyone that can bring me the money by midnight? Yes indeed I knew I could get someone by then to pay him. He wrote his name on a slip form from the valet parking and Now I just had to make it to the third floor...............at least that is what I thought.There is not a wheelchair in sight and the employees that are walking out of the hospital have no desire to help me in any fashion, as they were getting off work. By now the heat and my liver failure had taken every ounce of energy from me. Ofcourse I started praying to find a wheelchair that I could lay my few things in and use it for a walker as well. My arms were way to weak to use it as intended. At "amen" there was an elderly man pushing his wife out and was going to get his car for her. My prayer was answered and I quickly asked If I could have the chair after they were through using it. He smiled at me and was glad to help me with this request. Although not before mentioning I look like i need more than that chair. Nice man he was and his wife was lucky to have someone as genuine and sincere to help her through her days here on earth.
Now that I am finally in the musky smelling hospital, all was needed was for me to find my place on the third floor and the surgeon could fix this untimely matter. Not that it happened that way at all. My journey to the elevator was one I must say would have appeared to the naked eye, that I must be on drugs. My vision was not clear and my motor skills were lacking any grace at all. However I did make it to the third floor and just in time , as the last 2 surgeons were leaving and caught me as I came off the elevator. They were jovial and seemed to want to guide me away from my final destination.
The two young docs asked if I needed help finding my way, I was so relieved to be there and I almost felt I had won a race of some kind. My reply was simply I had a schelduled surgury and that I was a few minutes early. They both looked at each other then stared deeply at my animal crackers and water. What laughter took place as one held his composure enough to tell me that I would not have surgury that day, as no one was there and no more surguries were on the books, not to mention that eating cookies and drinking water is a no-no and I would need to go to admissions before ever seen on this floor. At this point I was disillusioned and I was fully aware. However I knew what the doctor told me, For me it was just another 50 miles of journey to Admissions. What nice guys although, they offered to help me to first floor once more. My decline was somewhat gleefully taken. Onward I will march as my pride will always walk before my brain.The admissions office was now my new plan , only my body wasn't doing much better than my mind at this time. I was now outraged and weak. The combination is what got me there slowly but surely. First floor could not have arrived quick enough and I was able to tell them who I was and they told me to have a seat an wait for my room. There was absolutely no problem with me sitting down, at this point it was all I could do. The wait was a bit longr than I anticipated so I fell asleep. That in itself is not at all my norm. Sitting in a chair an sleeping isn't something I have ever done before but it was what I needed and I slept for over an hour.
A very perky lady woke me to tell me that my room was ready and that in a few minutes someone would wheel me to my room. For whatever reason that did not go over too well with me at that time and I informed her that I was going outside to smoke and I would walk and find my way as I had done that whole day.
The walk outside was not as I had expected . My thoughts were I had napped an could make it to the street to smoke as there is a no smoking policy for the entire hospital. Well I made it there but by then I could have cared less about lighting up much less smoking. As I sat in my wheel chair feeling less smug and more with my wits. Feeling quite ok with God laughing at me , not so alright with anyone else....in the world. Now it's time to reverse direction and go back to the place I dread on any other given day.
Back at admissions and getting the info to find my room. The smiling woman that was so perky is now just wanting me to follow protocol. Nope...couldn't do that. The heat and walk had altered my senses or maybe just my stubborn off course pride. So she gave me the room number and I found it without any issue.
wow ! What a nice room, a private room! The staff was so incredibly nice and I was feeling like a guest at a decent hotel. The ginger ale was flowing and dinner was about to be served. Not that I was going to eat it but how perfect was it that I was asked. The nurses came to introduce themselves and tell me that the team of anesthesiologist would be in soon. This is shocking to me. I had 2 teams with four doctors on each team. We spoke of all complications possible and they gave me info on what I could research myself to decide what I was comfortable with. A far cry from what I am use to. However I had no choice but to go through with this second surgery but this time I was told I would be awake and it would be no cutting me but to go down my throat and remove the stone or whatever blockage . My severe allergies to the anesthesia was all we were concerned with and they spoke of that it had a man made shell fish component to it. That is bad because that is one of my many severe triggers but decided to sign off on this procedure anyway.
The start of the procedure was to alter consciousness without completely putting me under. This must have been fun and interesting to the staff. I actually remember the start of my out of body, but this time I went in my body and could see the camera and I was telling the staff what I saw. One lady said that isn't possible, you are not facing the screen to see all that! After that I don't have recall of the procedure but afterward I was taken back to my room via 4 guys that I was giving them pieces of info about them. Their past , their emotions, that's always fun for me to do but this time it was truly different. I was not meaning to, more like it was a drunk convo on my part. Three guys out of the four were pleased, the other kept asking why I had it in for him.
Throughout the days of recoup and rejuvenate, I found the baby grande piano a place of peacefulness for me, as I would carry me and my IV"s to first floor and play til my hearts content. I did run across those 2 surgeons that earlier had told me to go to admissions and check in. They seemed to enjoy my playing and were my best audience.
After 5 days it was time for me to go home. I could not be happier! This stay was nicer than any other but home is where I belong. A few nurses came in and introduced themselves and a few I knew came to give me a hug. That has never happened before.............. but who could'nt use a hug after this ordeal?
My conclusion to this article, is that there is no one better than ones self to take precautions , be very active and to make you and your love ones a priority in all, especially health care! The rest we have to leave in God's loving hands and let him embrace us and catch us when we fall .... or falter.