I resuscitate ceaselessly,
I wage wars with verve,
In a point of no return,
Yes, A Warrior Princess I am. ~a rare disease patient, author, & blogger with TOI
It's glaringly obvious that the force of life is greater than death. But didn't life hit me violently worse than death?
When I started writing, I intended not just encouragement to oppose our current impressions, hoping to briefly pluck them out of persistent grip on the authority of the power of death. Pleasing all is impossible. Neither is everybody sweet and pleasing.
There are myriad challenges of having a malady. If you have the most unusual diseases known to humankind it becomes a fateful condition where you can't afford to be ignorant and continue being tired if you desire quality and extension of your life.
There will be an intense, somber, indefatigable strife where you don't have to worry only about healing because recovery is a tough process that takes time and patience leaving scars behind but you have to bother about financial demands to get a proper diagnosis and the desirable treatment regime.
Few diseases of the present have little in common with the diseases of the past because of their rarity but like an owl, you have to pore over abstruse medical documents and make it your pastime with a great penchant for general science with an interest in medicine.
When you are bombarded with heavy-duty medical words of a mysterious sickness as your diagnosis by medical men who claim to possess full knowledge of those things don't become trifle too dreamy and treat their words as Gospels.
I think of the overwhelming despair of the medical practitioner roaring for my craniotomy.
“You come and sit in my chair; let me go sit in your chair.”
Their impossibly bumptious opinionated ego deflates showing all the indications of superiority. He has earned his degree through remarkably well medical training going through the rigors of medical school, how can an inferior creature ask him questions? A face reader once met with me in Delhi and said " you are full of questions and when death will come to take you, you will ask who are you?". True, I have abibliophobia and my mind seems to be bursting with questions.
I had an attack of tetany at 2 am and was put in emergency. Tetany is a disorder characterized by enhanced neuromuscular excitability that is caused by various metabolic abnormalities. Irrespective of the causative factors, the variable clinical presentation can range from asymptomatic patients to life-threatening emergencies.
Tetany usually is caused by low calcium levels, and hypoparathyroidism that causes low calcium levels also causes long term tetany.
It was critically important for the thyroid surgeon Dr. Saikat Gupta to employ strategies for minimizing and preventing hypoparathyroidism (or Hypopara for short), including carrying out the most appropriate extent of thyroidectomy for a specific patient.
I met in the palace of Dr Ambarish Mithal at Vasant Kunj and paid hefty fee. Treatment with vitamin D analogues and calcium supplements is not ideal and can lead to long term renal problems. Calcium levels fluctuate but home calcium testers are not available so monitoring this condition can be challenging. Until 2015, Hypopara was the only endocrine condition without its own replacement hormone. Injectable parathyroid hormone is now licensed for use in the treatment of hypopara in the USA but is not yet available elsewhere. Putting his attention to only hypopara he neglected diabetes mellitus, fractionated metaepiniphrine tests
As you can see proper test wasn't done. Go to Ambarish Mithal if you have diabetes only, but shhh! Don't tell much because he blocked me due to my queries.
What did you say?
"Aha—you observant rascal. You are bonkers...are you crazy?" I got severe attacks of seizures while JEE and I still have penchant for acquiring knowledge. I dissected animals hence am aware of anatomy
No, I am not. I keep myself well-informed so that I don't fall into the wrong hands. I love learning and gaining knowledge which brought in understanding, comprehension, a better grasp of my bizarre diseases, not to be afraid of death or lead an unlived life like a zombie. Because in the end we only regret the chances we didn't take. Live life to the fullest and try bringing color to my life. I feel alive, not just breathing.
The oddity of my life is I have to choose doctors. AIIMS pheo, para research confirmed my oncogene vHL mutation. Yet doctors aplenty believe in biology, stage, grade not genes.
Neuroendocrine tumors (NETs) are highly vascularized, but the process of proliferation and maturation of vascular structures during tumor development and progression has remained unknown.
A biopsy is the gold standard to confirm the diagnosis but does not differentiate between pheochromocytomas and paragangliomas. Since most paragangliomas are vascular, a preoperative biopsy is not common.
Fortune favoured and a versatile doctor who identified my SSTR in brain.
which is the cause of extreme diarrhea whereas Fortis Memorial hospital remarked eating too much is causing diarrhea. Whereas, I lost over 20 kgs. I eat only protein, egg white, no rice/ carbs, fat, lactose-free milk.
We both aspire a life with mountain of books, trees bearing dark chocolate, and, ripples in the river of coffee. This life is getting kinda boring. I wish to swap it with the other.
Dr Sajjan immediately wrote chemotherapy and octreotide but after 3 chemotherapy my liver transplant surgeon said to go for PRRT. Because my brain tumors oozing somatostatin especially the site of craniotomy said https://www.rgcirc.org/doctor-profile/dr-partha-s-choudhury/
Sometimes doctors purposely put you to death, yell at you that she's been helping for 20 years whereas I know her since 2007 and help came only at 2015. Never go to https://www.fmri.in/doctors-profile/ishita-b-sen and team who knew but said I'll die in my 40s to media because I was not offered proper treatment. Never go to such doctors and be a scapegoat. Mum made patishapta and gajar halwa for all of them.
I think I never dropped my active brain somewhere but don't worry I will come to the conclusion never go to Ishita and Vineet Pant also Sugandha if you or anyone you love develop symptoms if you want to lengthen your life. Better choose Sajjan Rajpurohit a great doc. "Because you didn't use contrast and didn't say anything I got net met. For your information, my liver transplant was done today in 2008. Does it make 20 years? You have forgotten math. Now I have met all over because of the ominous moment I called you Didi and depending on your judgment. Ma too thought good and made patisapta but you insulted her. You will face your karma"--- the best conversation with an ailing patient because I questioned her medical negligence.
Always keep yourself informed. There are doctors sitting there to take your life for the sake of money. I told my neurologist knowledge is not your property and he readily agreed.
Medanta Medicity, Fortis Memorial Research Institute, Cancer Cross , there are plenty of hospitals and doctors who misdiagnose, maltreat, block you without doing proper treatment. You will find
"willing to keep this oath and my profession- to reckon him who taught me this art to butter my bread, and not to share my knowledge with any sufferer never relieve his necessities unless the required sum determined by me is wholly paid. I will never look upon every patient of mine on the same footing as my brothers if only they are rich beyond measure and compensate for my toil. I will never remember to treat rare diseases with fatalities and cancerous growth because the sick human may affect the person's family's economic stability"
As the mutant oath like mutant viruses or mutated oncogene.
The Italian poet Dante Aligheri, in “The Inferno,” extrapolated from traditional Catholic beliefs and placed those who had committed the sin of suicide on the seventh level of hell, where they exist in the form of trees that painfully bleed when cut or pruned.
Don't feel like a tree cut or pruned
Even if the percentage of survival is low doctors wave away as complex cancer, not common cancer, if you have to do common cancer why did you waste a medical seat which could have produced another Dr. Soin?
Hail !
Drs Subhash Gupta, Vineet Govind Gupta, Ishita. B .Sen, Pankaj Dougal, Sugandha Dureja, Madhavi Chawla, Ullas Batra, Rakesh Jalali, Vangipuram, I am happy for your chicken's heart doing only a dime a dozen.
Those thinking of their degrees and knowledge if you don't venture into novel job how will you learn?
Not leaving a patient to die, not at the cost of a life improvement the quality of life and then learn to win. Do you wannabe in the 7th Hell?
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation for Rare Diseases was established the day in 2008 to raise awareness for unknown or overlooked illnesses.
Do you feel a rare genetic cancer patient needs love, support laughter, care of aching with isolation, loneliness, and solitude we have one life
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation for Rare Diseases was established the day in 2008 to raise awareness for unknown or overlooked illnesses. During my first experience till now I always spoke with authority because it was my body he would work upon and if he doesn't do a very careful job with his scalpel with full knowledge of what he was about to do then my fragile life bird would have flown away. I had the full right to know what was to be done to me.
After completing their medical degrees do they plunge into the world of unique diseases, keep themselves updated, keep track of all those maladies?
How could USA invent cancer drug? Because of dedication to save lives. I get mesmerized in Dr. Kaelin’s research is cause for optimism, not only for the 200,000 people suffering from VHL (von Hippel-Lindau disease) around the world, but also for those facing other cancer diagnoses.“When you are studying about von Hippel-Lindau disease, you are not just studying about [the] …. disease … you are also now touching other diseases as well, where we can use the VHL gene to understand what is happening.” As such, the understanding of HIF involvement in tumorigenesis provides hope for the 40% of the world’s population who will be diagnosed with cancer at some point in their lives.
Do you feel a rare genetic cancer patient needs love, support gaiety, care because of aching with isolation, loneliness, and solitude we have one life I talk a lot because do all the honest talking and blessings to all before the day of silence.
There's really a good chance of getting old with silver hairs if my venerable disease gets an opportunity for good treatment, my potentials are realized and my battle with the selfish self-centered people ends. My life will be perfect and trouble-free. Every day I look at myself in the mirror I see a zebra.
