I am 28. I am dying a wholly preventable death, and in the meantime live through hell every day. I have no one else to turn to. It is with all honesty, frankness and sincerity that I extend my hand to you, with a single six-word questio: Will You Help Me Live, Please?
Hello, prospective donor. My name is Manuel and I am 28 years old. I suffer from Ankylosing Spondylitis and/or Reiter's Syndrome: In essence my immune system (the body's defences) has turned against me, attacking my spine, joints and superficial blood vessels (causing vasculitis, death of tissue and subsequent long lasting ulcers). My lower vertebrae are fusing with one another.
I suffer from clinical depression, have convulsed with loss of consciousness more than once in the recent past, show clear indicators of adult-onset diabetes and have high blood pressure. Dyspepsia, recurrent gastritis and metaplasia of the oesophagus (Barrett's Oesophagus, a condition associated with oesophageal cancer) resulting from years of acid reflux-induced oesophagitis complete the clinical picture.
None of these ailments is under control.
I must employ a walking cane, and move extremely slowly wherever I go. I cannot exit the house without another adult--commonly my grandma--to assist me in walking.
I have survived this living hell for many years past.
I finished college in 2009, after making a massive effort to complete the 45 subjects in the curriculum--designed to be tackled over nine semesters, or 4 and a half years--in three intense years of study, sweat and tears. I finished with a GPA of 9.57 out of 10 in the traditional grading scale of Mexico, obviously in use in my institution: the National Autonomous University of Mexico.
I was told by school administrators at the time that my GPA placed me within the top 5% of all students, graduate and undergraduate, at the School of Political and Social Sciences.
Please notice that I claim to have finished college: so far the conglomerate of intense emotional pain, anxiety, deep depression, uveitis, excruciating pain in the lower back, hips and knees, and a great difficulty in urinating, among other symptoms that are also a constant feature of my life, has more than robbed me of the inspiration to organise my ideas, putting them on paper in dissertation form and then submitting and defending said theses from a synod of five professors. I cannot even remain long in one position, sitting or lying down, therefore, how may I write?
Without undergoing this "Professional Examination", my years of work, my hard-earned grades were for naught as the University won't grant me any degree. Mine was to be in Political Science and Public Administration (a Licentiate).
It was my dream to challenge myself further by pursuing further education in the United States. I managed to get admitted to the University of Pennsylvania's Post-Baccalaureate Undergraduate programme in order to strengthen my background in History, as my formal education in the subject was scant and I intended to apply for a scholarship for the PhD programme in History of Early Modern Europe. It was my intent to focus on the Spanish Empire and the upheavals of the Reformation.
In retrospect, it was then, in 2010, that the first symptoms of Reiter's Syndrome/Ankylosing Spondylitis first appeared. I felt such mental and physical fatigue at Penn as I had never experienced before, along with a light pain in the lowest back and behind my knees.
On account of these troubles I was compelled to withdraw and return home as I simply was not able to give 100% of me to my studies; I could give probably not even 50% of my capacity, or even less than that.
With failure at Penn came depression, a devil that runs in the family. Years passed as various physicians had the same tests conducted time and again to no avail. I knew I could not realise my dream of writing my dissertation and continuing my education in the state I was, which furthered the depression.
After many doctors of various specialities came and went, in early 2015 pain behind my knees started to escalate to the point I could not help but feel excruciating pain when bending them, to the point I could not come down the stairs and food had to be brought directly into my room.
Bouts of very high fever, up to 40o centigrade, came for a few days in a row and then disappeared until some four to six weeks later, when the cycle would restart.
My unexplained fatigue, which was overwhelming to start with, grew tremendously at this stage. I must add that by years I had been enduring my father's verbal abuse (my household consists of my paternal grandparents, my father, two aunts and me--one of my aunts covers practically every expense, with my grandfather's small pension contributing the remainder; my father is disabled since 1991, my other aunt has not been hired out of prejudice against those 40 and older by most Mexican employers, despite having an extensive resume in HR management in tourism and the hotel industry).
For years my father had been calling me "useless", "lazy", "parasite" in many, many colourful and insulting manners. My extended family did not know the entirety of what I live through, and thus to them I was also a lazy parasite sucking on my working aunt's blood.
The difficulty urinating and the intermittent uveitis (an acute, sharp burning pain caused by inflammation of the cornea in the eye, I believe) gradually came to be, and along with the fever came the ulcers: a red spot appears in mi knees or in the oral cavity, it grows desensitised and finally breaks open leaving a dime-sized deep crater of flesh. They usually remain open for months at a time.
Medically, a new physician asked for new tests as this seemed to him an arthritic case. It turned out to be a seronegative spondyloarthropathy, and after further--extremely expensive--testing the antigen signalling Ankylosing Spondylitis and Reiter's Syndrome was found present in my blood.
It was mid-2015 when these discoveries were made. I was referred to an even more specialised doctor, a rheumatologist of very great renown, who studied the various tests conducted through the years and then proceeded to examine me properly.
It must be said that by this stage I was already using a walking stick (at the age of 27) and had done so for a couple of years, could only walk only very slowly and climbing a set of stairs remains a colossal task. The doctor carefully bent and flexed my knees, examined my ulcers--which were due to vasculitis, tied to the other symptoms in origin--and touched my spine until he came to an extremely painful spot starting around where the dorsal vertebrae end and the lumbar ones begin. He continued his examinations until I was in tears due to the pain.
He prescribed three MRIs and further blood tests, and set a regime of medications to be followed alongside those for my depression until the MRIs could aid in fine-tuning treatment.
We have been unable to have the MRIs done (they mostly seem to concern the sacrolumbar region and the immediately superior section of my spine, and my hips, thighs and knees), nor have we seen any doctor except for a very occasional consultation with my psychiatrist since September or October of 2015.
Only intermittently can we afford my medications, at first due to my aunt's and grandpa's credit cards, and when these were exhausted, only through the good will of a relative in my extended family or an intimate friend. As a result my treatment is inconsistent and has had a very weak impact--my knees hurt the same and there is at least one open ulcer in my mouth or knee at any given time, plus the fatigue keeps grinding me down, as does the atrocious articular pain--I have lost much of the ability to bend over as the inflammation of my spine and fusion of vertebrae continues. Naturally the depression has not wound down.
My medical bills, concerning only medications, run as high as a staggering 600 USD per month that we cannot afford. I have been prescribed Chloroquine, Tramadol, Immuran (the immune suppressor) and cortisone (which I don't take given that it is extremely dangerous to simply consume it intermittently), Paxil, Pristiq, Lyrica, Clonazepam and occasionally Zolpidem, principally, athenolol for my high blood pressure and Glucophage for diabetes.
My old life is destroyed. My dreams of furthering my education abroad and of being a great academic seem further away than ever--all I can do is continue to teach myself History and learn as much as I can of other Humanities and Social Sciences, which I have never stopped doing through reading, ultimately gaining knowledge nobody around me appreciates. My illness has buried my grandfather, aunt and myself in debts to banks, family members, friends and others. My entire life transpires in my room, and so shall it be as long as I continue without stable treatment.
1. I wish through this fundraiser to have the three MRIs done in order to determine more exactly the extent of damage in my spine, hips and other joints;
2. To be able to attend medical appointments again;
3. To ensure the availability of my prescribed medications for at least a few months in order for the effects to be tangible;
4. Through the efficacy of treatment will enable me possibly without even leaving the house to complete my dissertation and perhaps have a fighting chance at eventually obtaining a scholarship to somewhere, and to establish a source of income to cover the costs of my life (by writing editorial pieces on political phenomena, and starting a YouTube channel devoted to the cultural, historical, political and social issues of my interest, and also to examine one of my few remaining hobbies (video games) under the light of said issues--I require some hardware, a camera and video-editing software for this last YouTube channel project, which is dear to my heart, since I still harbour the dream of becoming an academic and sharing all what I have learned with others, and this channel would be a modest way of sharing that knowledge;
5. To pay our most outstanding debts incurred by my illness and placate the most rapacious creditors.
Just for reading these dreary chronicle of a life shattered and a few dreams, I thank you most sincerely. If you deign to donate, regardless of the amount, you will always be in my heart and prayers as someone who helped me when no one else would, and I truly and wholeheartedly thank you in my name and that of my family.