The last two weeks have been pretty eventful… some moments are good, and others are not so good. First, I had a flare-up of angioedema on my face. I haven’t had this for two years, and the last two times, I needed Prednisone to clear it up. I couldn’t find anyone to prescribe it for me unless I was seen first, and I try to avoid going to the doctor as much as possible. I asked to have a virtual appt, and that didn’t fly either, and all of the people I’ve seen in the past were on vacation. I googled it, and everything said that it would clear up on its own; I just needed to be patient. So I depended on ice compresses, aloe vera, and Aveeno cream, and it did clear up its own, thankfully. That gives me hope for the next time.
While I was still battling that, our Internet access went out. Once we determined it was not an area outage, we made at least half a dozen calls to CenturyLink, we learned it was our modem, and we wouldn’t get a replacement until Monday (this was on a Thursday). We were told a tech would be out on Tuesday to connect the new modem up.
In the meantime, we had to cancel two virtual doctor appts because… no internet. We tried to do Zoom on my phone, but the connection wasn’t stable enough, so we ended up doing a phone call appt with the top pulmonary doctor at the U of W, who had gotten all of my partner’s records from his local pulmonologist. The doctor said he was sicker than we realized, and he needed to see him in Seattle for an exam and tests and talk about the possibility of getting a lung transplant. He spent all of Friday on the phone making arrangements for a ride over to Seattle and talking to his other doctors.
Saturday was quiet and rather boring. I’m glad I have my phone, or I would go nuts. But I can’t do extensive typing on my phone so writing for my blog is out. I do have a few things I can do that are on my hard drive and don’t depend on the Internet to work. But still.
Monday, the new modem arrived, but the tech never showed up on Tuesday like promised. More phone calls, and Centurylink insisted they didn’t have an order for Tuesday, only for the following Tuesday. Grrrrr!
My partner went to Seattle early, and his driver was very patient with him. The appointment with the doctor wasn’t until 2 pm, but he had multiple tests and an MRI before seeing the doctor. In the end, the doctor said he was not a good candidate for a transplant; 1) the cut off age is 70, and he will be 69 in Sept, 2) there is no family in Seattle to help with his care… he would need to have care for 6-7 weeks before he could come home, and I’m unable to provide that kind of care, and 3) he would need to lose twenty pounds, which wouldn’t be that much of a problem for him. The stunning part is when the doctor said the lung disease is now considered terminal, and he has about two years to live. We talked about this, and in the end, he was relieved. We knew a transplant would be a terrible merry-go-round, and he didn’t think that was something he wanted to do.
I had a friend who was on the transplant list for a new kidney. He was on dialysis and had to jump through so many hoops to be considered for a transplant. He worked out every day, biked 12 miles a day, and worked himself up to the top of the list. And then he got pneumonia and was bumped back to the bottom of the list, back to working out and biking and working his way back up the list only to be knocked down again from another bout of pneumonia. By then, he was both irritated and frustrated. He was done. He took himself off of the transplant list and off of all treatment. He said he didn’t want to live with his whole life revolving around getting a transplant; it took the joy out of life. So he stopped it all, and three days later, he died.
We also know that doctors give the worst prognosis… if I had died every time a doctor insisted I was going to die, I’d need to be a cat with nine lives. So we decided we would live in the present and face each day one at a time. That seemed to have calmed my partner down a whole lot.
Friday was spent with more calls to Centurylink, and they insisted tech was coming on Tuesday, and a second modem arrived today, exactly the same as the first. We are going to keep it as a backup if and when the first one fails.
Today was my last day with the Lymphedema therapist and home care nurse, and they have helped me so much since March. My Lymphedema is under control, although it’s something I will always have to deal with. But the best news is that the radiation wound finally closed up, and there is a nice layer of new skin over the site of the tumors. I will have to watch it and make sure I don’t tear the new skin and watch the swelling that could rip open the skin again. But right now, I am not wearing a bandage around my leg as I have for the past three years. I will miss these wonderful caregivers, and I’m so grateful for everything they did for me. The experience was invaluable for when my partner will need home health care nurses.
The two weeks of not having internet access were frustrating and annoying, but even more than that.
Being online is no longer a luxury; it is a necessity. I think of all of the things I do online, which includes the following:
Virtual doctor appointments
E-signing of financial documents
Sending the results of my INR blood tests for the blood thinner (done weekly)
Ordering things from Amazon
Writing my blog
Doing genealogy research
Reading books on my desktop Kindle app
Reading newspapers online
Listen to music on my Amazon music player
Watching YouTube, that I now can do on the big screen TV, but I still need internet access to do that
Watching Discovery Plus on the TV, that also needs the Internet
Playing Facebook games
Chatting with friends and family on Zoom and Messenger video calls.
When you are housebound, the online world is your only connection to others. It’s my communication, educational, entertaining, relaxation, and more.
There is a bill in Congress now: “Thirty House and Senate Democrats unveiled a new $94 billion proposal Thursday to make broadband Internet access more accessible and affordable nationwide, aiming to remedy some of the digital inequalities that have kept millions of Americans offline during the coronavirus pandemic.”
The phone tech told me the reason that CenturyLink (official now called Lumen) has such lousy customer service and why it takes so long for a tech to come out… there are only have four techs for all of the Peninsula of Callam and Jefferson counties (that’s a lot of territory to cover) is because they are selling a phone/internet company to a management company called Apollo Global Management. Because of this, they are not hiring anyone new. So my feeling is that this company that started as Bell (when I worked there) and then US West and then Qwest (when my partner was still there) and then CenturyLink will be an even worse company than it is now… and it was going downhill when I worked there 50 years ago! The last time I saw a company sell out like this, the new owners destroyed the original company.
The tech said he is hoping to hold out two more years to retire and get his pension. But he won’t be trusting CenturyLink for his own online access, he recommended Elon Musk’s Starlink, so I’m going to check into that. We are also waiting for Wave Broadband to arrive in Diamond Point by the first of the year.
But for now, I’m just thrilled to have a much faster Internet connection.