I have no breath control. My breathing is shallow and fairly rapid. It is automatic. I cannot hold my breath by choice. However, every 12 minutes, my body takes a deep breath. The time varies, sometimes it occurs as soon as 5 minutes, and it has been as long as 19 minutes. It’s funny how I know that. After my deep breath, I cannot breathe at all for 15-20 seconds. Then I’m back to shallow breathing. I am unable to generate any sound, except when I exhale that deep breath. I have started watching videos by a speech therapist to try and increase my breath control. At night while I sleep, I utilize both an oxygen machine, as well as a hu humidifier. I don’t know that I really need them anymore, as my oxygen saturation doesn’t seem to go below 93-95%, even if I’ve been off of it 10-12 hours. I’m pretty fortunate because I’ve never been on a respirator. Celia says there is some danger if I get too dried out. I don’t think that’s much of an issue, with my living in Missouri. I still do PT twice each day, Monday – Friday. I am supposed to be eligible for both PT and OT, as well as speech therapy. Finding someone who will come to my home though, looks like it’s going to take work. If I could just get someone to come once or twice, they could teach us what we need to be doing. I’m supposed to start getting tela-visits from my doctor, which is going to have to take the place of my nurse’s visits. It will also require a miracle with the sketchy internet. We haven’t been able to find a nurse yet who will come out to our home. It’s not the end of the earth, but I’m pretty sure you can see it from here! For the most part, making this change has been a lot of promises made, but not kept. It’s difficult watching Jonell put under so much needless stress; she already has so much to do. Let’s just say it hasn’t been the easy transition we were told it would be. I need to make more of an effort to try to improve my muscle strength. I have gotten better at controlling my left arm. But I’m not satisfied, I should be able to do more. My problem is that I stay on my laptop so long, that I am so tired when I get off. It’s like I don’t have any strength left to do the exercises I need to do. I have to come up with a compromise. So, there you are. From this post forward, I shall concentrate on issues I am having, and my overall health. One final point I’d like to make. Because of the generous donations of many of you, the people you shared my story with, and some that gave us cash, we were able to reach our goal for my chair. You’ll never completely realize how this has humbled me. Those complete strangers who came forward on my behalf is an encouraging feeling. I am definitely going to find a way to pay it forward. Bless you all!
