Living with chronic ILD (Interstitial Lung Disease; #Interstitiallungdisease) caused by an autoimmune disease that attacked my lungs, muscles, and nerves, causing all sorts of havoc with my body is not a pretty picture and It has been very hard for me to swallow at times. Nevertheless, every day I pick myself up, put on my red lipstick and start fighting all over again to get my health back. For me, there’s no other option…
My lungs on some days fill-up with inflammation, I cough a lot on those days and often it is hard to talk. Humid and hot weather is unpleasant because it is difficult to breathe.
Thank God for San Francisco’s wind and fog all year-round. Love it, need it!!
My specific autoimmune disorder has not yet been identified. Oh, they (the doctors) think it is this or that. I have great doctors, don’t get me wrong, so my guess is, I am a complicated case. Three months ago, they thought it was Sjogren’s, but I have none of the systems of Sjogren’s.
My nerve disorder was diagnosed as MAG (Myelin Associated Glycoprotein). Now, I think we are on the right track with the nerves. The way I understand it is my Myelin (proteins in the central nervous system that protect the nerves) has been attacked by the autoimmune disease. This creates instability in so many areas of the body and I seem to have all of the instabilities. Walking, even with braces to support the legs and feet, is tough. My balance is off, so I stumble and tumble.
My sense of touch was diminishing, things were slipping right out of my hands without sensory notice, especially, crystal champagne glasses. My beautiful handwriting was almost reduced to scribble. But, thanks to my occupational therapist and a whole lot of putty pulling, rice grabbing and handwriting exercises on my end, my sense of touch and handwriting is coming back… Cheers!!
There are two wonderful physical therapists at Saint Frances Hospital in the pulmonary maintenance unit. They also manage pulmonary group therapy. Since November, I have been attending the group therapy three times a week; my body is getting stronger and my breathing is getting better. The group and the therapists, well, we are like family now!
Over at Kaiser, the new campus in Mission Bay, there are two AWESOME young women that are very smart neurology physical therapists. They have me on my feet! I am doing exercises to wake-up inactive muscles in my legs and feet. They are teaching me all sorts of balancing, core strengthening and sit to stand exercises in addition to a routine “to do” daily at home…Sara, who I work with 1:1 is unbelievable. She is very hands-on, clever and extremely knowledgeable about the nervous system. We are trying to teach my brain and my upper body to compensate for the lower body and at the same time, teach my legs and feet to do what they are supposed to do. Much progress, still a lot more work to be done. I shall dance to the music…
It is and has been a ride-and-a-half. I’m meeting outstanding people. Some are on this ride with me, some are long-term survivors of lung disease, COPD or other lung disorders. Their support has meant the world to me. Their life stories, their ride to date are interesting too.
With the support and help from my daughter Erica, my partner Don, and my sisters Tina and Dee, I continue to enjoy every moment of life and we laugh a lot.
My healing and treatment journey continues as I keep up the fight. More to come…
Be Bold and Bloom. At your best every day, in every way and at every age no matter what the circumstances are. Be your SuperSelf.