I was born in March of 1970, my birth name was Tammy Lee Smith, since I have married and given birth to five children from 1991 to 1998 and from illness divorced and currently live in Wisconsin.
I was about 3 months old when I was first rushed to a hospital, it was McKay General in Ogden Utah. The doctors could not in their life from that second all through my young years figure out what was wrong with me. So we chose to name the symptoms and treat blindly. One was called "dizzy spells' as I could feel the earth moving it felt under my feet and when my eyes were open it was like I was spinning and any sudden movement would make me vomit continuously then it being best I not move until it past which could last anywhere from 3 hours to 48 hours. This came and went constantly as a young child and young adult.
The other big issue that continued to become worse overtime was "respiratory" - I was classified first with allergies, then it was changed to emotional disorder, and then changed to Bronchial Asthma - today is has been changed to 48 years later to acute respiratory failure, COPD, and hypoxia. When I was in middle school was when we started acknowledging that there was something wrong but everyone said I was ok, it was just a fluke. I was an honor roll student and in 6th grade I had to be placed on strict rest for just a short period and drink syrup.
Now I was in 8th grade and my body has collapsed on the football field where we were playing flag football. I still remember everything started to become dark but before it I couldn't move, literally nothing in my body would respond to me. By 9th grade what it is was, was getting worse, and doctors were wondering it was "emotional form of asthma" - My body ached and I would rock, breathing was very difficult. However I did not know the pain was actually not anything to do with asthma. I was restricted to no PE hoping that it was simply activity aggravating my ailments. By 10th grade I just could not breath. New thing that was not being dealt with was having my blood overdose on Asthma meds when absorbed to quickly. Doctors explained that example I could take Theo-Dur which was made with Theophylline but I could not take Theophylline in the generic strand because the time release. It absorbed to quickly and thence sent me into toxic shock and respiratory failure. We knew this from me being hospitalized repeatedly for weeks at a time and a review of the meds. It had become lawful to substitute meds that year and I was one of the first victims showing why generics actually can harm. I was place don bedside for the balance of my high school years.
When I was 19 (1989) I was in a vehicle accident and my body would not heal. I had migraines continuously, could not turn my neck for about 15 years without it seizing up and having to see a therapist to work stops the spasms. Very painful, I would try not to cry and many times I would have less rotation of my mechanics and upper neck afterwards but told this was good as it would help the muscles heal.
During this time in 1990 my body went into shock just before I had my first baby. I could not breath and the hospital could not stable me. I had been given a breathing treatment and whatever was in it sent me into a spiral, the body acting as if it was on fire. I was admitted to Sutter Memorial where we prepared for early delivery and specialist fought to oxygenate my body. Every 15 minutes we would change the meds. This went on for weeks. We even did nuclear lung test. I had one day some form of convulsions which led to liquid coming out of my ears, eyes, nose, mouth, and private areas. We literally thought the babies bag had possibly broken because of so much liquid. However my baby was ok. I begged the doctors to listen to me, that they were now the ones making me sick, that it was meds, and the breathing was what I called waves, something in me was doing it and the medicines were now attacking me instead of vice versa. So carefully though very objectively we removed them slowly and everything vanished. Literally vanished. The specialist insisted that a baby that had survived such madness could steal have something wrong thence they would be delivering her. A baby that was showing perfect health. Few weeks later we did deliver her and it was truly sad, she laid in rows with other babies who where so tiny, the size of barbies and here she was healthy and full of life as any new born full term baby should be. We gave her Ampicillin one of their favorite antibiotics to use with me for a few days and then both of us were allowed to check out and head home.
Because of sickness and injury I was on USA SSI from 1990 to 1991. Later I would moved to Oregon with my baby and her father. Shortly afterwards I was told that you can't receive Workmen's Comp and SSI at the same time and Workmen's Comp took over my care from 1992 to 1995. However this did not work very well as I was always sick and it required me to cover the bill when not covered by workmen's comp. I luckily had purchased private insurance but still had to flip the copay's and of course pay the premium which I would lose in 2010 because of the new Obama Care Health reformation acts, I could no longer afford the sky rocket new premium.
By 1995 I was so sick and my left lung was turning black that Dr. Dunn was trying to get the team to understand that something was wrong with me and it was no vehicle accident nor is it asthma. I did not do drugs, smoke, or drink so everyone was not happy. The only thing I did do was continuous physical therapy trying to stop the spasm and pain.
By 1998 I was having my 5th child and things were not going so well. I almost died when my insides hemorrhaged from a routine procedure. It seemed I was anemic but my blood work did not reveal such and it was actually irritating everyone that oversaw my care. It was as if a positive was actually a negative but a positive and we could get no medical scientific answers of what was going on with my "blood". Especially when I would be heaving in pain and body trembling and skin ice cold and oxygen unstable. I remember them telling my husband to take me home in 1999 and him telling Rogue Valley Medical Center he was not driving me up the mountain that we needed help, I was sick, something was wrong. He took me to the hotel a few blocks away. Had to carefully lift me up out of the car and walk me slowly into the room. During the night he was awoken by RVMC who needed me back to the hospital as quickly as possible and were so thankful that HE HAD NOT TAKEN ME HOME! A radiologist had found a stone in my kidneys and thence explanation of why my body was trembling and seizing, on fire, and shutting down. In 1999 during the above incident I was introduced to Dr. Tom Bui who would then oversee my care for the next 11 years we just did not know it.
The following year my doctors at Providence were having problems sorting out who should be paying for my care, workmen's comp or me. My oxygen was again not stable but then it was and then it was not. The lab technician says to the good doctor you know our test can't agree. She says but we do know what we are seeing is real especially since I had been hospitalized at points for days. I remember I was in the side room trying to maintain sanity as my body shivered and ailed and skin was pale and cold. It was those seconds that forever changed history. I had survived something, something that years prior to 1970 would have taken my life. A human being born with a genetic parathyroid gland, Mayo Clinic stated it was the 5th mutation of its kind that they have ever seen in 2010. The mother glands. So here we are 2000 and we are about to do all the labs, the third and fourth palate which traditionally is NEVER performed! Calcium was over lvl 14 and at times over lvl 15 ...according to medical charts you should not survive over lvl 12. Yes you thought you had it bad at level 11? no imagine that nightmare you are living but 10 times worse for me. My body was rapidly filling with stones the second I stopped growing and having children. I was in "shut down" - and my system were reacting too. That actually makes sense to me however to this day (2018) so many people and doctors do not get why my entire systems nightmare should be all related and is because with this gland: we don't heal like other people and we also don't get sick like other people, because "our" DNA and cells and organs have been mutated from long term calcium and hormone exposure along with mental restraint!!! I count and try to clear my mind to survive horrific pain and even rock, what about you? My body also responds with anxiety, stress, rapid heart rate, and if no relief oxygen loss, loss of ability to move bowels and or urine, and at some points the most hardest seconds "concentrate" !!!! and that is truly not fun for any one suffering from this disability. My speech is also pressured because unlike most people I can't breath and I take thence deep breaths to exert and many times even speak.
So in 2000, when this "genetic gland" was discovered everyone argued it was a error and kept testing me. Every time it was proven to be not an error and of course the historical operation also agreed in 2010, I still had to go it alone. My state listed me to die in few days to months in 2000 and here I am still kicking 18 years later. The one man that tried to operate in the early 2000's was denied because it was said I had 3 percent chance to live. He would have performed a older parathyroid exploratory operation where you cut the person across the neck completely so I agree that I may not have lived as many reports did agree with the majority of the decision my state position took. I also like to note I have several major life insurance policies at the would have had to pay millions so no one wanted me dead that was overseeing my medical care. I still remember my father paying Conseco Life yearly versus monthly and telling my husband never pay one day late because they will cancel within seconds. So right, my husband sent the payment in and it arrived a day late and the policy was canceled!!!! ASAP! I purchased this home I live in with the paid in refund which was a little over $5 grand. :( Yes how lucky I am my home only cost me 500 bucks that I purchased here in 2014 in Wisconsin as it left me enough to registered my title, pay my land taxes, and move in!
Once in 2009 I was able to breath a little bitter which was after about 30 to 35 ESWLs, (yes the hospital purchased the machine and I thank them for that and Tom Bui even paid my copay's and deductibles out of his pocket as he was the one keeping me alive and also thank him for that while Dr. Patrick McCarthy wrote to the government and plead my case and studied my blood and Mayo Clinic thanked him for that) so once I was a little bit better and could be off oxygen, I drove from Oregon to Rochester, MN at the end of July of 2010 and was rushed into surgery. I went in with private and because I was now broke, being divorced, and no longer had a home or business as they were sold off, going on "public welfare medicaid" which is a "nightmare"
2011, I was trying to work a low skilled job and very easy, however my blood pressure was over the charts and my body pale, ice cold, ailing. Within few months I would be back at Mayo Campus ( I stayed on in Rochester versus going home to nothing ) and we would be performing a double kidney stone removal which I did not want to do, Bui said never to do both at the same time. However I was ignored, I also did not have private insurance any longer. The operation was horrific and I almost died because my system rejected the stents and the style of operation. It was some sort of robotic where they physically remove the stones versus using a ESWL then use stents to remove remaining particles.
2011, after the kidney operation, I never went back to work, instead my father who had come to live with me wanted me to go to college. However I needed my children to head off first so that was my main focus and then of course me. I helped with my parents medical care while they did the same vice versa. My father was very proud, especially as he watched his oldest grandchild, yes that health baby girl get her associate degree. I however was not doing so well.
In 2013 Mayo confirmed that it was not only kidney stones passing through me but others forms. By 2014 we removed the gall bladder with another robotic surgery. It was felt it was a mistake afterwards however it can't be undone and I was really not given other options, I was on medicaid then taking the easier fix is forced upon you. My body ached. I needed to know what all the build up and pressure was that made me look like I was pregnant but I was not getting any answers after the operations from 2013 and 2014. I was size 6 but no longer now I am 10 times larger and size 16.
These were the current circumstances I was not living with in 2015. When I tried to get my SSI back in 1995 I was denied because I had married, 1998 the same and but I appealed and was then told to give them an account to deposit but then denied as court ruling ordered the sell of my home and lands. I was land rich because it was being sold and I no longer lived on the land and this changed everything, 2000 denied because of married and land rich because it was being sold and I no longer lived there. This went on and on. When the land was sold in 2008 I received $33,000 and lots of medical bills to pay off and attorney cost of the sale. ??? still not sure how I was "land rich" in 2009 workmen's comp said law stated they had the right to buy out my medical entitlement and I was forced settled for 20 grand. I took 5 grand and gave it to my husband as a loan. He was barely making ends meat and his new company was in trouble. I took the other and packed up me and the kids by 2010 and drove myself to Mayo Clinic where a red carpet treatment was given to me the following morning of my arrival. The day I got there and asked if I could still see the professors the computer told the staff lady to have me come as a walk in early morning but no guarantees. She told me this was very odd but yes I could see the Mayo professor who is studying my illness. When I saw them, the professor, he smiled and told me that everyone had made a mistake dear young lady because you see ... "you can't be alive" I told him very kindly yes I can and you only need my blood. Even my youngest daughter got a lecture of why my very existence can't be. 15.34 calcium, yes they within about 15 minutes had the results back to the professor and their cameras and staff stopping me from leaving the building. (the good doctor really thought it was a mistake, good thing he also chose to challenge medical science that morning) The professor would send off for Dr. Patrick McCarthy's study in Oregon which showed a world view of the exposure and effects of calcium long term. Things one can never imagine nor desire to endure. HyperCalcemia, Graves, HyperParathyroidism, and much much more all caused by genetic mutation within me. Dr. McCarthy because he could not save me asked me is he could thence study me for historical value thence the reason he tested me in the morning and night, blood and urine for years showing what we endure! not counting oxygen levels as low as the 20's! and yes I was hospitalized during those events for very long terms and as always as the mutated blood ran through my system so did the disease say hello and good bye and hello. So here is Mayo Clinic July 29 of 2010 dealing with "walking death" and on that same day they are introduced they had bones density test and results completed, surgeon teams prepared, cat scans, sestamibi scan tests, blood test, more urine test, and long list all done by 2:30 pm sharp that very day for the surgeon team that would be headed by Dr. Rickerds. The next day we would do dye studies and then God willing I am still breathing operate. Which we did August 2 of 2010.
August 2nd of 2010 Mayo Clinic operated but as I awoke they also needed everyone to understand and had to explain to me "it was not curable" !!!! see I have the "mother" gland !!! what does this mean? it means that Mayo Clinic was able to alter the gland some, severe it from the thyroid where it had mutated and thence pray that little alteration would prevent my calcium from being so high. However the gland also had to be most importantly left alive! Removing it would activate another "gland" and also the nodule that was on my thyroid actually and that had to be made clear as well not a nodule but a parathyroid genetic mutation. So they had to chopped, slice, and dice on my thyroid and parathyroid very carefully. The parts severed from both organs were frozen and today I live with the aftermath of not being able to be cured and it is 2018.
In 2013 and 2014 my body also received medical hernias which I also have to deal with and actually only know from now reading my medical records from what it appears performing "robotic operation on me" Yes I was just hospitalized yesterday 8 7 2018 with calcium lvl 8 and too low and stones!!! and hernias (several forms) - the hernias neglected to be mentioned and what has driven me to step out and speak out, write this very document.
What was interesting is today's government has forgotten citizens like myself and making getting medical help or any form of help extremely difficult. Most recently a letter was sent to me that I no longer qualified to be allowed nutritional supplement (food-stamps) which frighten me it will at some point also strip my medical that was restored now twice since 2017 at some point. This is the governments argument and also is insulted with me having an IQ and I purchased a home here for 500 bucks. yes $500 dollars! and I am happy because really I am at my wits end and grateful at least I have no mortgage and only land tax to pay and maintenance. I should not be allowed to "leech" of public welfare, that entity I even paid dividends to as well like everyone in America does. So I asked questions of reasoning. It was stated because I will actually obtain a degree, a masters degree at one point versus just a two year associate. The other was that someone in DPSH has been signing off my medical records all the years past and under the new regime it is medically required to be signed off as me being an "unfit worker" yes some MAS document created under the 1996 Able Body Work Laws. So I had to take this "unfit worker" document this last month 7-27-2018 to Mercy in Wisconsin to have signed off because it appears Department of Human Services has been signing them off. I also had to remind SSI that while trying to attend physically college where I am a political science major that I medically collapsed and oxygen went into the 50's and their 2016 and 2015 denial was proven to be error per respiratory distress failure being a serious issue in my daily mechanics as documented in 2017 where numerous times fire departments had to use Epy Injections and Liquid Magnesium on me to stop what I call "waves" since childhood - on that note I also just finally got the SSI WI to pay for their medical appointment to test my breathing which I failed and was denied SSI WI because of ... oh yes my "IQ" - literate people are not entitled! Yes I am hoping you are smiling or angry because you should be one of the two as I want that to connect deep inside. People with "IQ" should not be entitled to benefits that they are promised when sick. USA SSI 2016 came back with of course that I would and did before I was married and because of illness but now because I married and the new regulations from marrying I do not have 10 years consecutive so "denied" - child benefits I was guaranteed under my combat fathers records "denied" reason oh yes marrying (marriage which is a practice of belief and customs of mature adults yes is a violation of government entitlements)
So the new doctor filled out the document on July 27th of 2018 and set me up to see mental health? but yet I have zero mental health issues, the good doctors have suggested without saying it that I should in direct words that I should just let them help me the only way they feel they can, thence could I "lie" and state my sickness to be "bipolar side effects" thence not mental illness but side effects one would have from thought what is wrong with me can be seen in the blood and it really is from Hypercalcemia long term exposure and Hyperparathyroidism being the enemy and cause. I agreed to see the psychologist this coming September in 2018 but only on the condition that we will also be seeing the endocrinologist. I went to the appointment last week, July of 2018. I asked about the stones, stones answer was "you have been cured?" then end of the conversation with the endocrinologist I said no I am not my body passes them on a regular bases and if not ailing from them I am dealing with respiratory. So see the new endocrinologist did nothing for me but led me to another door which I am still trying to get an appointment for, seeing a blood doctor that studies blood, because he stated he does not. You are well, fine and cured. Days later I am in the ER, 8-7-2018, and now being sent to a new neurologist as we will have to blast the ones larger then 5 mil and possibly the one trapped in the chamber and my CALCIUM is low!!! not high! and this is something I think many should check as I am trying to understand the connection and the need to see a blood doctor to research and understand > My McHc is too low and my Hemoglobin and my blood pallets as well seem to be fighting. Drawing blood is getting harder. Which explains why I'm getting so tired, no stamina, even feint and no oxygen and possibly the hypoxia as this new hospital added to my list of visible symptoms that we are seeing currently. I am frustrated, the only thing in 2017 we did was restart oxygen therapy for days my oxygen will not stay above 88 which can be at "anytime" as I do not get to know when. Currently it is like a door and me trying to climb over to get answers of what is going on with my blood work!
So clues anyone? what do we do to be "recognized" as citizens born with disabilities. HypoParathyroidism is now recognized yet the most deadly strand and the side effects we are left with "IS NOT" which HyperParathyroidism ... I know there is only small handfuls of me, the incurables and not to be actually alive. Yes 1 in 1000 years ratio according to Mayo Clinic was my survival ratio! But since I am alive. I ask my fellow countrymen and good doctors to now help me use my historical records to change the injustices that have been committed against "citizens born with disabilities" yes citizens that live their live combating illness that did not ask to be ill. We did not do this to our self. It is also so not a MENTAL ISSUE ...it is a disease, blood disorder disease, which we must to our best try to survive. The other nightmare is because it is our hormones being altered and thence DNA make up and us knowing nothing about the DNA make up we are at a dead end wall. Even when everything looks normal compared to humans not born with this same genetic gland as we or I was - we or I can testify - "indeed are still sick" ... we are partially cured but not when operated upon, which is testified to in all medical journals. We must still have continuous medical care for what we can scientifically see and can't. Because we must always have continuous medical care we must always have a "primary" insurance that is there even when we have fallen flat of the face of the earth being able to support our self on are own as I think we would all prefer! That said we need our country to support us as well. We did not do this to our self and thence trying to provide for our self is difficult at times and we need "the Department of Human Services" to recognize that living with HyperParathyroidism is extreme suffrage and hardship upon our body and physical and mental health. Another reason that brings me to the table to release my medical records and bring protest against the wrong doings done to me and many others is something my brother said to me that was all to true. My brother said it like this, "it does not matter how smart or clever you are because when you are down, those stones are running through your system and or your bodies chemical makeup is being altered, you mostly are bed ridden and "what little" you can accomplish is barely wiping your butt, washing your body, cleaning your house, or making yourself a meal" and yes how true! I am not sure why I am alive but I am grateful, but at the same time I am tired of arguing that we need to be recognized and with respected, honored. I am the daughter of a 7 year combat decorated veteran who also cap'd out SSI' and retired with a 50 retirement. Calvin Cyril Smith died in 2014 with only fighting for one thing, the promise made to him that I would be looked after, any one of his children was born with disabilities we would forever be looked after. My mother, Joy Louise Smith argued this was wrong what was being done to me to her death in 2017. Now on my own I intend to take this head on. We have a system that has forgotten us. And that is wrong! What is amazing to me is as a child doors were wide open to see to my medical care and even education. As a young woman with private insurance the same. As woman tired and nearing fifty I am now alone and left to fend on my own. That said no more! This is me fighting back, a survivor!
I can be contacted and text at 608 208 4290 and live at 446 N Parker Dr, Janesville WI 53545 and my email is email@example.com ... Please reach out to me, help me not only continue to survive but make our government become dedicated to our survival! Thank you, Tammy Lee 8-8-2018 (sorry for any typos, very tired, and laptop words is not working today thence can't use to self check)