Well this day started out to be so horrible that I was not sure I would make it.
I woke up at 3am gasping for air, my bi-pap had stopped working. My heart was racing as I was struggling to get some air. My oxygen concentrator was plugged in so I could get my oxygen level up, but it was not working right. Things were going downhill so rapid we did not know if I would live the next few hours. My pulse ox had dropped to 82 and my heart rate was at 156, things were just horrible. We think there might have been a brownout that blew my fuse. I have been struggling for the past few days because of the exposure to carbon monoxide from the furnace, so did not need this bs.
I have a portable oxygen concentrator but it was acting up because it could not go to the 4 liters I was needing. I just hoped we could find someone to fix my large machine. That did not happen, my machine is over 10 years old.
I was gasping for air till 10am and we managed to get me to up to 90 on my pulse ox, I told Al he could go to school and if I needed him I would call him.
Needless to say, our wake up was bad, high adrenaline to say the least. Poor Al was woke up with me gasping and begging for help.
After we got up and I could make some sense I started to trying and find a place for help. Whenever I could breathe a little I would call places trying to get my machine repaired, or rent one. The trouble is I have no insurance and without it, can not rent. I put out calls to everyone that might know someone, and just kept calling and looking on line. The company that I had bought my machine in 2002 was out of business.
I did have a repair man's card who had worked with the company that I had bought my machine, Gary had did the yearly maintenance on it until the past couple of years when I could not afford it. I found his card after trying to remember where I might have it. Gary did not do the maintenance on oxygen machines anymore, but said he would check around and see if he could find me a used one. He called me back a couple of hours later and got me a deal of a life time. He is my angel, without him I know I would not be getting through the night.
He helped us with information on how to repair my Bi-Pap, so now that is working. I can not sleep without it because of the Polio, my diaphragm is semi-paralyzed, so I hold onto my CO2 and turn blue. Life can really suck for me when my equipment starts to fail me.
So if anyone needs medical repairs or equipment I want to give you Gary's card.
Not only did he find me a new machine, it had been completely rebuilt, he delivered it to our house and set it up.
Gary is our Angel....Thank God I was able to find him.
I have to go to the doctor tomorrow, need to find out why I am going sour......
For the past few days I have been dealing with a very sad heart. My friend Theresa Arini is on life support and her husband Vincent is by her side since it happened last Tuesday. Things are not looking promising and it so saddens me. When I talked with her a few months ago we were going to get together after she moved.
I had the privilege to meet Theresa about 15 years ago at a Woman and Disabilities conference. We hit it off right away and enjoyed our time together. We kept in touch and after I got my job at at CIL she came in for some services. Later she got hired at the CIL so we became work buddies. Both of us had breathing issues, and we both used mobility devices.
We found that our working conditions were fraught with dangers and had a toxic effect on us. There were many discussions on how abusive and intolerant some of the other employees were to other people with disabilities. The irony was, we were working at at CIL, we were to be the advocates for those with disability issues.
Theresa had quite a few disability issues to deal with on a daily basis and yet she did it. She became my hero and I told her so. She is 13 years younger than me but since birth had to overcome and deal with life threatening issues.
There was one thing I loved about Theresa and that was her sense of humor. Sometimes she would wheel into my office and ask if I could but her shoe back on her artificial leg, she could not bend the foot. She said that some of the other employees wee not comfortable helping her. A couple of other times she would come into the office and whisper, "could you help me put my leg back on?". I agreed and we would go to the bathroom, both of us in our mobility units wheeling down the hall, and help her reattach her leg. Other times she needed some help with her oxygen tanks and I would help her switch them over. YET, Theresa worked 40 hours a week, and she did so because she loved her work.
When the CIL made it too toxic for her (and me too), she was devastated, but went on to getting a job with the state, better pay and people.
Theresa was almost finished with her Master's Degree from Wayne State University, she said she just had some funding issues left. Quite frankly I think WSU should have just given her the degree for living the life she had.
I found some pictures of Theresa on her FB page and am including them here.....
This is Theresa about 1972............
The Theresa I worked with
A picture from her sister
When ever I think I have it bad, Theresa comes to mind and I shame myself for feeling pity. Theresa and Vince travel, have great family and are always active.
A few months ago when I talked with Theresa she expressed her concern that her heart was not doing well at all and that her breathing was giving her grief. I understood what she was saying and we discussed how we struggled with these issues. Both of us felt that we were a burden to our spouses and wished that we had easier lives. I was looking forward to coming up to see her and regret that the summer gave me so much trouble this year.
I have one wish for Theresa and that is she be peaceful and without pain. I am not sure what God has planned for her, but I know my heart hurts because of her struggles and the pain that Vince is going through now. My prayers are for both of them.
