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Living with Multiple Myeloma in Hyderabad , India . Random musings .

Post BMT struggles / care (Bone Marrow Transplant) for Multiple Myeloma

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This is loong mail 🙂

In all these years i have never been sensitive to what my body was saying. But now it has become a way of life for me . To listen to it and care for it.
Prior to my Bone Marrow Transplant (before 2011), I always ignored all the signals that my body was sending.
I would suffer from frequent bouts of coughs and colds. I took antibiotics and moved on. I also suffered from frequent asthma attacks. I used inhalers and moved on. I always felt weak and weary. I was always anaemic .I grew weaker and weaker till one day I collapsed and was detected with Multiple Myeloma.

Post my Bone Marrow transplant in Jan 2012, my life did a U Turn.
In the last few years I have become very sensitive to the signals that my body sends. In fact a lot of my time now is spent in planning and taking care of the needs of my body.
I have to make note of the foods I eat . I have to avoid sweets/sugar. I avoid fried foods.I need to balance protein, carbohydrates ,fats, vitamins and minerals.
I also have to ensure that I don’t take a lot of potassium rich foods as the kidneys cannot handle. No bananas , coconut water etc .
I can eat only small portions of food as i feel full very soon.
Due to this I often feel hungry and thirsty every one to two hours and hence should always ensure that there is something to drink or eat where ever I go or during meetings at work. I eat/drink something before i go to a meeting 🙂 I have to pack a lof of stuff that would last me through out the day. I carry a big bag with breakfast, lunch, raw veggies, fruits, snacks to work.

I am also sensitive to any pain in my bones. MM affects bones. Higher number of plasma cells (the cause of my disease) cause pain in the bones. The pain is quite different from any other pain and feels as though the bones are being stretched.
I have to avoid dusty areas and if at all I unknowingly inhaled any dust i know immediately and pull out my inhaler. I also have a nebulizer at home if things get worse.. I use a face mask or keep my nose covered when i visit malls or other public places. I mostly avoid such places.
At times my eyes start itching or become reddish and there is a burning sensation and I have to make a visit to the ophthalmologist and get some eye drops. Almost every summer i end up having mild conjunctivitis.
At times I feel my nose is blocked and i have to switch on the ‘steam inhaler’ at home.

I am sensitive to any changes in my toes especially the area around and below the toenails. I started to experience swelling around the big toe nails after using Thalix for 2.5 yrs. I made several rounds to the dermatologist before she concluded this was a side effect of Thalix. I am currently on Lenalidomide since 8 months and so far so good.
I was having intermittent pain in my abdomen ,in the ribs and in the area below the ribs. The pain subsided after taking Vitamin D supplements. I need to watch out for any further symptoms.
I was suffering from back pain and i am feeling better after taking Vitamin D supplements.
I have to check my uric acid levels,creatinine, Vit D.,B12 and take necessary supplements. I was advised to reduce intake of veggies like beans , cauliflower , peas and spinach to keep my Uric acid levels low.
I have to watch my appetite and observe if there is any nausea. If so i pop a pill first thing in the morning.
Have to be careful not to eat outside food and if I do, I have to watch if my stomach is doing well in the next few days ..if there is an issue I run to the doc .
Have to make sure I am drinking a lot of water everyday. I have a password which is ‘drinkmorewater’ 😉
Have to ensure that i replenish the stock of my supplements regularly.I get my allopathy medications from a local pharmacy..some Ayurvedic supplements I get from a store which is a few km away. I order some Ayurvedic supplements  online.I get one Ayurvedic supplement from Mumbai and another one from Bangalore. Have to make the payments and inform them so that they can courier.
Have to ensure I take all the different medications at various times during the day.
2 times each day I ensure I take long breaths for 10 mins.
I meditate for 10 to 15 mins every day. I should do this more often.
I am sensitive to colder temperatures be it home office or elsewhere. I always have a sweater at work  in my drawer and in my car. Too cold temperatures and i will catch a cold.

I have to avoid staying in the hot sun as per my doctors advice. My skin is very sensitive and i cannot bear heat nor cold.
My hands and feet are 50% numb due to Lenalidomide and so  have to be very careful when I hold stuff or while walking or climbing getting down the stairs. Items have fallen off my hand and slippers can easily fall off my feet as they often do.

Looking back I feel this is how one has to actually live their life. One has to be very cautious and sensitive to the body’s requirements and should listen to and take immediate action on any symptom that appears abnormal and keeps recurring. Depending the current condition of the body one has to be very selfish and take utmost care .

Treat your body like a temple ( a holy place) and treat it with great respect and love. Give it the highest priority. Nourish it. Pamper it. Invest your time and money to care of it. The ROI is priceless. Health is truly the greatest wealth. 

Author: Lifeisbeautiful the process of discovering my SELF. Enjoying the beautiful journey within, while I am on my way to experience an unknown Dimension.

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