It seems that each time I visit a new doctor or have a new procedure done, more of the puzzle of what caused my illness emerges. The most recent development threw me for a loop, though, I must admit.
Apparently, my illness is not a recent thing. According to the specialist in the field of advanced lung disease and transplants, I have been exposed to something, in his words, day in and day out for a long, long time. Kind of like miner’s with coal dust or a more recent phenomena, dentists and dental hygienists and particles of tooth.
What caused my severe allergic reaction issue, I don’t know and we may never know. It could have been the smog in LA that I lived in for many decades, the dust that kicked up there constantly, the mold from the house next door, the dander from my former cats or even something as simple as the down pillows I have slept on most of my adult life.
The doctor I am seeing now is very interested in my case. He asked permission to present it at a conference that is coming up. I figure that having many specialists look at the issues may be of benefit to me, so why not?
We’ve determined that I am at 57% lung capacity, which seems to be both not so great and good at the same time. I am apparently way too healthy to consider as a candidate for a lung transplant. We are about conserving and maintaining my lungs rather than trying to replace them.
My allergies still continue to be an issue and, with that in mind, I had 13 vials of blood taken to do sophisticated allergy tests. I don’t think I set a record or anything but it was certainly an impressive amount of blood.
I’m currently on a steroid (thanks to pneumonia from cottonwood pollen) and will hopefully move to a more cutting edge medication in the next month or so. While I like the reading I get in at night, I would actually like to get more than an hour or two of sleep. After seven weeks with the prospect of that much more, a good night’s sleep is awfully appealing. But on the plus side, I am reading through more of my books than I ordinarily do.
I’ll let the doctors do more investigation (though, of course, I felt like I needed to provide them a list of things that may have been exposure issues.)
Interestingly enough, the craft items that they thought initially were to blame were not. However, as part of preserving my lungs, I will be looking for new hobbies that don’t throw micro-dust in the air about me. My husband has suggested that I consider rock climbing or log throwing but I think I am busy all of those weeks. Perhaps writing, playing the piano, jewelry making, watercolors, drawing, and still designing cross stitch but not stitching it all the time. A whole myriad of choices stretch before me to explore.
I can still do bits and pieces of the crafts that I enjoy but will have to wear masks while doing so. That will get old quick so I will figure out what my new hobbies will be sooner rather than later.
One thing is for sure, my primary hobby/job/vocation are the exercises that I have worked out with my physical rehabilitation therapist. He will probably only be working with me for a few more weeks as I will graduate to doing the workouts completely on my own.
Right now, I am being challenged by core exercises for the first time in many years. That I am doing them on a memory foam bed makes it even more difficult. When I complain, my therpaist says, great, it’s good for you. Which of course makes me laugh and try all the harder to get done what needs to be done.
We’ve come a long way in the last few months. To get an idea of what I am doing daily, I’ll give you my schedule of events on optimal days:
7am – get up and get dressed (harder than it sounds but I sure enjoy taking care of myself)
8am – walk a quarter mile with supplemental oxygen while carrying ten pounds. (weights to increase over time)
9am – walk a quarter mile with supplemental oxygen as fast as I can while staying above 90 oxygen
10am – walk a quarter mile (slowly) without supplemental oxygen staying above 90 oxygen
11am – walk a quarter mile with supplemental oxygen while trying to find my pace (slower walk but one where I maintain a good oxygen rate)
Noon – walk staircase, do free weight arm exercises (currently using two three pound weights but weights to increase over time) and leg exercises (freestanding and partially supported)
2pm – walk one half a mile (slowly) without supplemental oxygen staying above 90 oxygen
4pm – walk one half a mile with supplemental oxygen as fast as I can while staying above 90 oxygen
6pm – walk one half mile with supplemental oxygen while carrying ten pounds (weights to increase over time.)
8pm – walk the staircase while carrying weights (currently at 2lbs but will increase to ten over time)
10pm – bath and ready for bed – again a pretty taxing task for me these days. It is pretty much the only time of day that I bump my oxygen levels up from one to two. At level one, I am pretty much in a state of challenging exercise at all times so it is nice to have an hour where I don’t have to monitor my breathing too much.
* alternate for times when walking is too difficult – do a movement based task going through items to give to other – clears them out of my house and gets them in the hands of people of enjoy them)
* second alternate for times when walking is too difficult – do a movement based task of my choice. I use this time for something I enjoy doing.
That’s a schedule that keeps me out of trouble! We’ve moved to harder tasks but every other hour in the afternoon to give me some me time for reading, napping or whatever feels right that day (though I usually choose an activity that is a harder exercise than I would have scheduled anyway.) I’m learning how to dial back when I don’t feel well and to slowly move back up.
This weekend was challenging as, of all things, sand from the Sahara desert was blowing into North Texas and playing havoc with my ability to breathe. I learned techniques to help and will be able to apply them in the future. I’ve always had a problem with stopping abruptly when confronted with issues and then being unable to restart. That can’t happen again, so learning the new skills and self control is important for me.
Through this and my husband taking over cooking duties (I can’t use the gas range while on oxygen), I’ve managed to lose 34 pounds in the last six months. I can’t really recommend almost dying as a good weight loss method but I’ll take it in the plus column for me. Also, who knew my husband would be such a great cook? He’s also lost about 50 pounds with his lower fat style cooking, so all is going well for the two of us.
Through all of this, I say Praise the Lord! He has been so very, very good to me. He has held me up and kept me safe when the enemy has tried to tear me down and destroy me. At the time the damage was actually being done, I was in a bad place.
It was probably around the time that my son passed away. I had stopped living the life that God planned for me and, instead, starting waiting to die. I wasn’t depressed but I could not see my way into the future. It took years and the birth of my first grandchild to make me see a future where I could be of use and thrive.
In the nearly five years since my grandson was born, my health started to decrease and culminated with the hospitalization and lung issues I have. While my health has suffered, my spirit has grown and blossomed. I’m doing what I’ve been called to do and life is very good.
God made sure that I was equipped for the battle as it has raged and he is still holding me up and keeping me safe. I trust him for my healing and spiritual growth. I must admit I am so pleased that so many doctors get to hear the story of my faith in Jesus Christ and get to witness what he has done and will continue to do with my life to glorify his name.
Romans 8:28-30
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters.
And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.