in the breathing in, give rest
in the breathing out, give rest.
muscle and nerves. static
there is a cycle to the static.
indeterminate; string and cans.
there is a cycle to hope,
to joy, to grief, frustration, and fears.
and there is hope.
and there is
Today, I receive a new machine. new to many anyway. By happenstance when i needed a new feeding tube pump the company sent a respiratory therapist to bring the feeding tube pump.
While she didn’t know much about feeding tube pump she spotting my auto-pap machine and asked me how I was doing. I was truthful. I said I can’t use it. I try from time to time but it doesn’t work.
and I told her what I was experiencing.
She asked more questions.
Spent time, and surprised me
as we talked.
She said she was going to talk to my doctor because she didn’t think a regular bi-pap was right either that a noninvasive ventilation would be better for me.
I was confused but said thank you okay, and went on. I received a letter in the mail stated insurance had approved the new machine. In speaking again I asked again, so is this the bipap the original respiratory therapist 2 years ago wanted but couldn’t get because of i surance?
No, this machine is better. it is bi-level but also different. This is noninvasive ventilation.
I am simplifying the conversation here, but today she brought the new machine.
Can I say how much I love it already
here is the skinny – so on a regular basis my finger pulse/ox is between 91 and 93, and can be 94-95. My pulse is most often in the 90 and 100’s. but i still constantly have headaches. which 2 years ago i was told by RT that that was the build up of carbon dioxide.
I do not have lung disease. its my muscles, and just like my wheelchair provides me the assistance I need to get around, a machine like this can provide my lung muscle the assistance they need to do what they do best, breathe.
After an hour on this today, my pulse/ox is 98% baby!!!! and my pulse was only 60!!! how is that for improvement.
I will be honest, I was skeptical because I tend to tell myself I am just whining. I am being a wimp. I need to ignore the headaches ignore the fog, ignore everything you think you feel because it must not be real.
I am sorry I still have a tendency to not believe my own self. as though one day I will just wake up all better, and prove my own brain who sometimes I admit, wouldn’t it be easier if therapy would fix this? if it were in my head?
But here we are today. A chance meeting with anoyher respiratory therapist who called my doctor and my doctor listen to this person, and I have know idea what has changed except a pandemic across the world, but insurance said yes. And this RT came and brought me the gift of filling mu lungs.
i am tearing up even now. Do you know how long it has been since I have felt the sensation of a breath, and I mean a deep breath. where I don’t feel scared because I can’t get that full feeling, and wondering and yes, getting scared when I see 91% because it means I am not getting good breath no matter what I do.
and my head beats myself up because I am supposed to be better, right? 91 is a perfectly safe number. Some of you may know what the heaviness feels like. neither feels as though you are breathing in nor getting air fully out, and that feeling that just builds. it is a horrible feeling.
Honestly it felt like I was slowly suffocating, but was too scared to be laughed at to use that word.
especially because i am doing well. You have no idea how strong I feel in comparison to the last 2 years. Rituxan has been such a miracle and a gift. I am so grateful I felt happy in just this.
But today. I am so thankful for this machine. You have no idea the anxiety in general that is lifted from my body. So, this week we celebrated National Doctors Day!
Thank you my medical team. This girl feels like she has one more tool in her tool belt to keep on this very cool journey called life. I didn’t realize how much and I didn’t realize this noninvasive machine really is the bomb. RT was right. and I am glad I trusted and did not say no. because I almost did. I almost said, “thank you, but no thank you, I will be okay for now.” I felt guilty.
These last few years have been such a gigantic difference between Idaho to NC. why this machine brings it up, i guess as the adage goes, you are sometimes the last person to see what others already see in you, inside and out, body, mind, and soul.
So, I wanted to share this link from 2017, my original journey in discovering my respiratory muscles were weakening. It is oddly timely because of the poem at the bottom.
Opening virtually at dk Gallery is a new show “Hope is the Thing with Feathers” inspired by the poem by Emily Dickinson. I believe you will understand. because on this day, I got my new awesome machine, my Trilogy 100, please call her Sky Sky Blue; Sky for short. and if you read that post from 2017 I think you will understand.
paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower