And Another CYSTIC FIBROSIS Meet- July 2017

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I might have not written about our annual meets before which happens at this reputed hospital in my city, Gurgaon. Parents along with their CF children come from different parts of the country and listen or share things with us. So this meet happens in every July and I have been going there since 5 years continously. But somehow this year it seemed difficult. when I woke up I had a heavy chest. My husband, Faraz goes with me every year but since he was busy with some work and could not accompany me, I called a friend but she was also busy. You don’t want to force people because that might show your weaker side to them. So I went alone. That 15 minutes drive felt like an eternity. I had tears rolling down all the way and just wanted to talk to someone. Called another friend and since I know he never takes anything serious in life, spoke to him for five minutes. Broke down and told him how scared I was to go inside. How heavy it felt on my chest. How I didn’t want to see those sad faces of parents any more but I knew how important it was to be there as I was their hope. They looked up to me. I felt better after talking to him. We had good time.I value life and moments. I didn’t want to miss it also. When I walked in,I saw the smiles of some familiar faces, some people greeted me, some looked up to me and some just stared. Doctor looked at me and hugged me. She was scared, I could see that look. She was not happy to see me. Though I looked healthy but she could read it from my face. I have been taking sleeping pills every now and then to sleep well.I shared some recent experiences and also taught few exercises which I practice and do everyday.

 

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 I have been experiencing  a lot of things recently like even after I take multi vitamins and minerals, I feel weakness a lot in my body. My memory is fading. I have started forgetting a lot and I am losing patience. I can see myself getting weaker, coughing more, having fever every night and having tired and sleepless nights. My yoga and meditation helps me a lot but then I can’t expect it to heal me 100%. My yoga, meditation and Jigar has helped me in healing but then I don’t forget that its progressive disease and it will affect more and more with time. Last when I was diagnosed for sphenoid Sinustis, I was asked to go a surgery which no doctor agreed for as its a complicated surgery and CF patients take a lot of time to heal and this time its my Gall stone. Its 23mm now and has been troubling me every now and then. I have been looking for a good surgeon and want to get it removed. My family, friends or doctors think I am scared of surgeries but I am not. I am only scared of that continous cough i will have and would hurt my wound every time. Some times when I cough too much, I can’t control my urine and drops of urine gets my underwear wet. Thats the thing why I run away from cuttings and chopping’s. But I will have to as I don’t see any other way.

I am only a human and have my ups and downs, have my happy moods and saddest ones but my spiritual journey has made me accept my medical condition, to cherish life and not get bothered what others think or talk about me.

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This CF meet was mixed emotional event for me. I happened to become a part of CF trust of India which has almost 500 CF kids in it and I am the oldest it seems. Had I stopped and not gone, I would have not been able to reach them. I am thankful to almighty for giving me this opportunity that I could help someone or make them feel good about their kid.

At present the medications I am on are:

  • Tab Pan d- OD
  • Tab. Omnacortil-20mg OD
  • Tab. Krislow 100mg -OD
  • Tab Azithral 250mg- OD
  • Tab Montek Lc- OD
  • Cap: Creon 40000 TDS

Nebulization: Twice a day

  • Asthalin
  • 3%saline
  • Tobamycin 80mg

Steam once a day

Inhalors:

  • Asthalin
  • Seroflo

Nasal Spray

Arzep

Cocktail of multivitamins

  • Radcal Z
  • Omega 3
  • D rise
  • Because
  • Evion
  • Meganeuron
  • Syrup Elixir Neogadine

And once a while I take combiflam or dolo650 for body aches

I am also put on small doses of sleeping pills which I generally avoid and take one awhile when i really am too tired and want to sleep well.

I will inshallah write very soon. Lots of other things are happening simultaneously. Will write about my first solo trip and the next trip I am planning soon, Inshallah.

Take care

Almighty bless

 

 

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AroubaKabir04 View All →

:-) A seeking one.
By profession, a Wellness Coach for Physical and Mental Health, Certified Yoga and Pilates Therapist, Grand Master in Meditation, Traveller and a Blogger

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