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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
Being “caffeine alert” –heightened in awareness by drinking much coffee or tea – can be useful, especially when someone in the family is seriously ill or battling a rare disease. Although such situations are nearly inevitable and often strike without warning, trying to prevent or forestall such situations to the utmost of our capacity is important, and requires Preparing for them through proper Planning.
There were many moments of ambiguity – what does getting diagnosed with a rare disease mean? After a couple of encounters, my family learned the hard way and kept the following handy, in case of any medical emergencies while I was battling Isaacs’ Syndrome (a neuromuscular condition stemming from muscle hyperactivity. It is also called Neuromyotonia, Isaacs-Mertens syndrome, continuous muscle fiber activity syndrome, and Quantal squander syndrome) and membranous glomerulonephritis (a progressive kidney disease) apart from Lyme disease (a bacterial illness transmitted by ticks) and glaucoma (which damages the optic nerve).
The in-house medicine box
As my symptoms rendered me quite vulnerable to a host of common illnesses, we kept a box stocked with essential medicines. The nearest medical shop is almost 5 km from where I lived also made this practice necessary. Some general precautions apply, such as ensuring the medicines are not consumed past their expiry date or storing them in conditions ideal for preserving their therapeutic value and being safe from weather conditions.
Emergency contact information
In my family’s case, the list of emergency contact information included an ambulance, a junior doctor, and other medical staff who were available round the clock on all days to forestall any medical emergency even late at night.
An emergency contact information can be a lifesaver in case of a medical emergency. In an emergency even a person with the best of memories may fumble or miss on the important information relevant to that situation therefore it’s advisable to have their names along with phone numbers handy during such situations. An elderly couple residing in Delhi has a white board in their room mentions some of the important contacts that can be used in those ‘just in case’ situations.
Useful Home Remedies
Though many of us might respond to an emergency with hysteria however nothing matches, keeping a cool head. We kept a list of useful kitchen remedies readily available as I was prone to a sudden drop in blood glucose or blood pressure levels, and to fevers and colds. We also used ORS often to overcome dehydration and supplement blood glucose levels.
My family doctor was always kept in the loop
My family doctor was our trusted confidant and knew my medical history, which made getting immediate relief much easier during my hospitalizations. Having someone who can act as a backup for your family doctor is also useful.
Health Records Management
I always kept all my medical records updated and properly filed for easier access in times of need. Putting in place proper recordkeeping tools made my entire care system from diagnosis and control to recovery more effective.
Keeping Insurance coverage in check
Although insurance coverage cannot protect a patient from getting diagnosed with a rare disease, its role in reducing financial uncertainty is undeniable. I made sure to carry my insurance details during my hospitalizations to simplify paying the bills, as getting treated for a rare disease had a steep impact on our pockets. Crucially, my insurance policy covered many pre- and post-hospitalization expenses and came with AYUSH benefits that helped pay for my Ayurvedic treatments as well. Not all insurance policies are as generous, so it is important to study and understand fully the policy’s details, coverage offered, and eligibility conditions.
My key takeaway
A rare disease patient’s world is full of surprises and therefore preparing for medical emergencies is essential to cope with unanticipated experiences. It took my family a couple of episodes to become familiar with my health requirements and deal with my situation competently using available resources and appropriate medications. We were able to connect as a family and understand the demands of my condition more thoroughly, which enabled us to prepare and plan better.
In a nutshell, being prepared and proactive can save lives during medical emergencies.
The views expressed in this article are the author’s own and do not represent any kind of medical advice.