Six months ago in December 2020 @fighting.sickness.with.fitness a fellow patient with Dysautonomia who lives in US posted the questionnaire above and I asked the one attached out of curiosity to be enlightened regarding the infusions that are included as her treatment plan.
I vividly recall reading through various replies and while being sincerely happy for her, thought of how unfair and downright ridiculous it is that medical personal who we approached previously turned away from assisting with IV resuscitation because apart from illiteracy, they were not interested in trying to learn or lend a hand after being shown the substantiation and research.
I do not question my creator because I believe this specific process of struggle was circled for me on the map of fate, but almost every patients mind wonders:
Why do we have to put up a tenacious fight for basic care that doesn’t even involve chasing treatment from another country with an exorbitant fee, advanced technology or major invasive procedures. One standard infusion is deemed more complicated than it ought to be.
IV therapy it’s not “expensive” if you exclude the bolus of other medication. It has individual risks that are necessary to always keep in mind and many additional aspects are taken into consideration at the time of administration in my situation but at the same times it’s necessary and somewhat “simple”
Why is it that some particular type of therapy or treatment with all evidence of surveys are right in front of your eyes yet out of reach and it’s an ongoing battle finding someone to agree and work with the person through it. Their rationale fails.
Nonetheless, at the very same moment my mind raced with the above arguments I made a silent supplication from deep within my heart with the hope of “one day it will happen” although I cannot perceive how or when and with who.
Later while searching for images on pinterest, the quote below appeared. Taking it as a sign and answer in response to the supplication, conviction embed in my heart.
I remain hopeful one day better care will fall into place for me
Earlier than anticipated, two months later Allah dictated “be”
Two months later from the date Kaytee posted her questionnaire a five year cry was accepted in the form of two professionals who are a means of double ease with profound expertise…
When I gaslight myself or hesitate regarding fluid amounts because it differs at every call out, prof will advise and assist accordingly via a phone call without doubting the circumstances to be real.
Unfortunately some of the egos dealt with during our consultations are a cause for regression but to the contrary, some characteristics I will forever appreciate is his level of humility and open-mindedness.
Accepting and admitting he was unaware such a debilitating disorder exists. Not refuting the facts or arguing that if he doesn’t know or hasn’t learnt about Dysautonomia previously, it is non-existent and he won’t look further into the research shown.
“Ok I’m acquainted with Dr …… who is your neurologist and I accept his word. Now you tell me how do need me to assist you going forward”
An approach and energy that proves beneficial because the doctor now regards you as his team member and includes your views to formulate a good symptom management plan. Taking a patients opinion into consideration matters! Alhamdulillah, I immediately knew there will be no searching elsewhere for a primary care provider.
بارك الله فيه
اللهم لا عين و لا حسد
Oh fighter who finds herself struggling to navigate uncharted waters:
All hope is never lost. Keep the supplications and efforts going even if the answer to your desire seems distant in our limited vision and know well:
𝐓𝐡𝐞 𝐩𝐨𝐰𝐞𝐫𝐟𝐮𝐥 𝐞𝐟𝐟𝐞𝐜𝐭 𝐨𝐟 𝐨𝐧𝐞 𝐬𝐢𝐥𝐞𝐧𝐭 𝐡𝐞𝐚𝐫𝐭𝐟𝐞𝐥𝐭 𝐩𝐥𝐞𝐚 𝐫𝐞𝐩𝐞𝐚𝐭𝐞𝐝𝐥𝐲 𝐜𝐚𝐭𝐜𝐡𝐞𝐬 𝐦𝐞 𝐛𝐲 𝐬𝐮𝐫𝐩𝐫𝐢𝐬𝐞
𝐖𝐞 𝐝𝐨𝐧’𝐭 𝐤𝐧𝐨𝐰 𝐰𝐡𝐞𝐧 𝐭𝐡𝐞 𝐬𝐡𝐚𝐩𝐞𝐫 𝐨𝐟 𝐝𝐞𝐬𝐭𝐢𝐧𝐲 𝐰𝐢𝐥𝐥 𝐦𝐚𝐤𝐞 𝐝𝐫𝐞𝐚𝐦𝐬 𝐚𝐧𝐝 𝐝𝐮𝐚𝐚𝐬 𝐦𝐚𝐭𝐞𝐫𝐢𝐚𝐥𝐢𝐳𝐞
و اتاكم من كل ما سالتموه
و ان تعدوا نعمة الله لا تحصوها
He gives you from whatever you ask of him so voice your hearts needs whether they are big or small
Du’aas of the ill are likened to the angels and nothing is impossible for one who is control of all
و استعينوا بالصبر و الصلوة
Salaatul Haajah produces miracles and Salaat-u-Shukar after the blessing has been granted multiplies that god-sent goodness
True to every word – “Seek assistance with patience and prayer”
Then wait and watch in awe as the odds turn in your best favor
If I wasn’t gifted Imaan and I didn’t have Allah, from where will I gain fortitude?
To manage the adversities of life and go on with symptoms that weigh a magnitude
Support interlinked with Sabr and Salaah
The only way he has brought me this far