Yesterday's blog reminded me of my first couple of years of adjusting my life to living with a chronic illness. I remember the months of just panic and trying to get information. Having information somehow felt like I was gaining control over my life and the disease. The ILD Support Group fed right into my Type A personality of gathering all the data to gain an understanding about what my future may hold.
This last month of being in the hospital and illness reminded me that there is no control. It is an illusion. There is no control but there is maybe good in having an understanding of the process. While I was in the hospital bed with a series of two hour IVs in my arm, it gave me time to think, to realized that I was scared because I knew what could lay ahead. If the pneumonia did damage or I lost too much lung capacity or if I suddenly spiraled downward, I was well educated about the next step, which would be transplants. I so worried that I was headed there while watching the antibiotics drip into my arm.
It reminded me that the need for transplants could and probably would happen quickly, not a long downhill slide. It reminded me that I have to stay in shape, to keep working out, to keep watching what I eat and to stay under 30 BMI. I also learned that it is important not to be too near the minimum of 25 BMI. While in the hospital and after I got home, I lost a lot of weight in a short amount of time. With pneumonia, I just couldn't eat. Dr. K. had warned me that if I stayed too close to the 25 BMI as my norm, I would probably get sick before the need for transplants and could lose enough weight to take me out of the qualifying weight minimums. I laughed at the time thinking I could eat a pizza and gain enough weight in one meal! But being in the hospital, looking at the food trays, I was unable to eat. If there was a prolonged wait for lungs, I would not be able to hold my weight. It was a huge lesson for me.
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