The life keeps taking twists every now and then, it’s like a roller coaster ride. When things are happening your way you feel at the top of the world & enjoy everything coming to you. It looks like you have found the secrets of life and can see all the events taking place as per your wish. You just call genie and he is there with a smile: Hukum mere aaka! And then, it fills your life with colors of the rainbow and you only have love, romance, music, and fulfillment in your life. That is the time when you are far away from even one insignificant negative thought & enjoy your life. But life has to show you its potential and strength. In one small moment, it turns its wheels. It gives you a sudden shock. You stumble and fall because you were not ready. I wonder if anyone of you has faced a similar situation in life and can relate to this!
Friends! This is what happened to me in the month of July 2019. And, this blog is about sharing with you my tragic moments.
MY LIFE ON JULY 15th, 2019:
I was at Jodhpur with my wife, Saroj on 15th July. We enjoyed the grand celebration of the first birthday of our sister’s grandson at Hotel Chandra Imperial. I enjoyed singing songs and was full of energy until the function finished at 11 pm.
I was a bit tensed because of some tension in my right-hand ring finger for about 5 seconds while going for sleep. But then, it was fine. Therefore, I could sleep well. However, the next day in the morning, I felt something abnormal in my eyes as if some translucent layer has covered my eyes. Dr. Naresh, my brother took me to Dr. Surendra Mathur, Ophthalmologist. He checked my eyes and did a thorough investigation. He informed me that the eyes are perfectly fine. Nothing is wrong. I came back but the problem persisted. I thought, it is because of the medicine for dilation at Ophthalmic Clinic and will go in due course of time.
NEXT DAY EVENTS:
We woke up at 5 am on the 17th morning. We had to leave for Palana and Jamsar in Bikaner by 6 am. Our taxi was booked and the driver reported at 5.30 am.
I felt that my right hand is feeling restraint in some particular direction while doing shave. Right-hand fingers were having some minor tension. A thought came to my mind that: kanhi ye paralytic attack ki shuruat to nahin! Should I avoid the Bikaner trip and get medical attention? My Bikaner trip was planned to visit the samadhi sthals of our guruji Ramlalji Siyag and his guru, Baba Gangai Nathji.
I knew that there always are negative energies trying to stop you from doing some good. Friends! You might have experienced that your positive ideas are often followed by negative thoughts. So, I decided to proceed. We left at 6 am.
The highway was full of large signboards. However, I was not able to read them clearly. Also, I was seeing double images. I thought it is the effect of yesterday’s dilating medicine.
Anyway, some more challenges were on way for reaching Palana where Gurudev’s samadhi is there. That is another story. I and Saroj had to take a ride on a tractor for about over a kilometer drive through sand dunes. But the darshan of samadhi gave us a tranquil feeling. We stayed there for some time and returned. While returning, our car was jumbled in the sand and after a struggle of over an hour, we could come out of this.
After another travel of about 40 km, we reached Bikaner. Now, Jamsar was 35 km away. But I started feeling bad and low. I called Dr. Naresh, who was on way to Ajmer from Jodhpur. He asked me to stop at Bikaner and immediately go to Neurologist. By the time he could manage with some Neurologist, we proceeded to Jamsar. At Jamsar we did meditation at the samadhi of Baba Ganagai Nathji. We had lunch and prasad at the samadhi sthal. But I found it difficult to stand up from sitting position after lunch and this was an indication of the seriousness of my problem.
We left for Bikaner at 4 pm. Our guides at Bikaner were Shilpi, Chanchalji, and Tanmay. We reached Dr. Sisodiya, Neurologist. He advised MRI, EEG, CT scan, and some other tests. It took us about 3 hours and based on the results, Dr. Sisodiya told me that everything is fine and I can continue my journey without any problem. We reached Jodhpur at about 1 am.
I felt in the morning that now my both hands are having a problem. Naresh advised me to consult Dr. Rajeev Mathur, Neurologist at Jodhpur. I went to him with Kailashji, my brother-in-law. No investigations could be done there due to a lack of time. He suggested one blood-thinning injection as I was to travel from Jodhpur to Bhopal for 18 hours. I started my journey at 4.30 pm with Saroj, my wife. I found it difficult to enter the coach. But with some difficulty, I could board. The strength in hands and legs were both appeared low. The train route was via Jaipur and Kota. Emergency arrangements were ensured.
Meenal, my daughter, and Mudit, my son in law received us at the railway station. With Mudit’s support, I could get down from the train. They arranged a battery-operated van to take me out of the railway station. I tried to ride, but fell down and injured my left leg. They took me straight to Dr. Gurudatt Tiwari, a renowned family doctor. He examined me and asked me to get admitted to the National Hospital immediately. By 10.30 am I was admitted and examined by Dr. Pande. I was busy with several tests, the whole day. Finally, I had undergone MRI Brain, MRA, Color Doppler, CT scan, HRCT & CECT chest, CECT neck, and pulmonary tests.
Nothing significant came out of the test. All the results, however, ruled out the possibility of a stroke. Medications continued. Everyone looked happy because paralysis was out of the question. God has a way of giving such moments of short-lived happiness. You must have experienced this in your own life. However, my problems were increasing fast. General body weakness was increasing. Eye diplopia persisted. Above all, I was seeing double images. My neck became stiff.
LIFE DURING JULY 21st TO 25th:
Finally, we received a report from Dr. Lal Path Lab, Delhi. And, it was observed that acetylcholine receptor binding antibody serum was 29.58. Its safe value was less than 0.25. Dr. Tiwari, Dr. Pande, and Dr. Sunil Malik, (Neurologist) consulted and observed that it is a Crisis condition of Myasthenia Gravis. Myasthenia crisis (MC) is an uncommon life-threatening neurological emergency. You may refer: (Thanks to Dr. Pravin Gare for his PPT):
LIFE: MYASTHENIA GRAVIS
They decided to start treatment with IVIG immediately.
Therefore, treatment started with 6 bottles each at a very slow monitored speed. This treatment continued for 5 consecutive days. And it has taken 10 hours every day.
Worst of all, it happened twice that I fell down in the washroom. I had no energy to move even a little bit, nor did I have the energy to speak.
Doctors explained to me that this is a lifetime disease. And, it will take me a few months to reach a normal activity level. Timely medicines throughout life will have to be taken. They consoled me that Amitabh Bachchan too has this disease.
The night of 25th – 26th was quite uncomfortable. My swallowing capacity diminished. Also, my respiration became difficult. In addition to this other problems were headache and sleeplessness.
On the 26th morning suddenly I became extremely restless. All of a sudden there was respiratory distress. I was unable to breathe. I cried and Doctors immediately put me on NIV (Non-Invasive Ventilator) support. Oh, God! I will never forget that moment in my life. There was a frustrating feeling that life is just going out of my hands. The doctor’s expressions and words were quite disheartening.
At that very moment, a strong feeling emerged in my mind. And this was that God and my Gurudev are just standing with me. Above all, they will save my life anyhow. I believe in miracles. And, I have strong faith in Almighty’s Superpower, which protects me always.
LIFE: HELPING HAND OF GOD
I was immediately shifted to the Critical Care Unit. I had undergone an MRI brain, MRA, MRV, EEG, and Brain Map Analysis. After that, Doctors increased medicines also.
LIFE DURING JULY 27th TO AUG 5th:
I remained completely on NIV support till 1st August. These were extremely painful days of my whole life. But, I knew that it was God’s way of testing me. My hemoglobin came down to 6. My blood group is the rarest; AB Negative. 3 bottles of blood were given in 3 days. They connected me with a rice tube for feeding purposes. A central line procedure was done for injecting. However, I was unable to communicate. Breathlessness was observed even with NIV. Also, sleeplessness in the nights. Sometimes in the night, I used to wake up suddenly frightened with some unknown fear. I was unable to keep my head in one position. If tilted, I could not bring it in the right position without someone’s support. Every time, I needed someone with me.
I felt some improvement from 2nd August. Doctors reduced NIV time slowly. I could manage a whole day without NIV on 5th Aug. But, I continued to use a rice tube for medicines & feeds.
LIFE DURING AUG. 6th TO 17th:
They shifted me back to Executive Private Room on 6th Aug. I needed NIV support twice on the 8th and 9th of Aug. I started swallowing papaya, banana, and shrikhand. Also, I started walking for 5 minutes with support from Physiologist. Sometimes, I felt very low energy-wise.
At some other time, I felt a little bit better. Nasal twang was observed every day morning and I used to be upset. Now, I was on steroids. The dose was increasing every 5th day. They gave me specific medicines for Myasthenia Gravis also.
On the 17th evening, I was relieved from Hospital after a stay of 30 days.
LIFE FROM AUG. 18th ONWARDS:
I had been on a rice tube for another 15 days. My steroid dose has reached its maximum and will stay there for the next two months. Then it will be tapered slowly in the next few months. I am taking Distinon 60 mg every 4 hours, even at 2 am in the night. I am also taking Mycept 1000 mg twice a day.
My condition has improved. I can walk inside the house. Can talk a little bit. But the energy level can be low sometimes and normal sometimes. Often 2 to 3 hours after taking medicine things are okay. 4th hour is not so good. BP and blood sugar keeps fluctuating unpredictably. I can swallow meals mostly after 1 to 2 hours of taking medicine. Energy loss is fast. The doctor says that even breathing is consuming energy. So activities are restricted and it will take a few months when I shall be able to perform normally. But timely medicines will have to be taken all through life. Thus, we all have to enjoy the journey of our life, it’s like a roller coaster ride, good & bad things keep coming to us.
LIFE: NEVER GIVE UP
MY TAKE AWAY:
By now, I know that it needs something more than medical treatment. My confidence and love for life are important. I have great faith in Almighty & I know He will always help me in the roller coaster ride of my life. I have always been true to him. That is why I have come out of the crisis condition. But, I need a strong mental set up to win over the difficulties in life ahead. Well! I find myself in a winning position today. Finally, I can win all battles of my upcoming life & enjoy my life to the fullest. And, this is because I have blessings from the Almighty God and my Guruji.