Wednesday, August 25, 2021

Time Flies When You Aren't Having Fun

Over a year ago, I came up with the brilliant idea that my husband should retire in the fall so that someone who is supporting a family could keep their job in case of lay offs and he would retire. My dream has always been to live on the ocean. His retirement dream was to live in a log cabin on a lake with a view of the mountains. Now we live on an ocean front house (not a log cabin) in Maine on the ocean which has one floor living for me. It also has my husband perfect house requirements - a two car garage and a fireplace.

We closed on the house in January (call me slow, that's okay) and moved in early March. The truck showed up about a week and a half after us but we are now settled in. We have a lovely view of the ocean. Nice big rooms, and all on one floor.

One of my biggest concerns in moving was having medical care. I have been going to the same medical facility since my first cancer diagnosis in 1981. I became a patient when the hospital was only a few years old. We all had to stand in one line at the front desk to check in at the beginning. Then it became two lines, three, and more. Then we could skip the lobby and check in at the department we were going to. The hospital had two sides - east and west. Then they added a side so they had east, central (formerly east), and west. Then we no longer had to park in the parking lot, we had to park in the garage (and pay) and they added southeast (which is where you got chemo on level 3) and fancy rooms on levels 6 and 7. 

I could explain lots to employees in recent years. They had no idea. Now its all different.

We moved to Maine. Its wonderful. (I dont eat lobster every day but as often as I want.) Seriously in Maine people are like people everywhere, they only eat lobster when they want - stop profiling.

I spent four months looking at houses on line after I got my brilliant idea. Then my husband explained to me that there was no reason to move from a pretty good house to another pretty good house unless it had a wow factor. That was eye opening for me and a good reassurance on what we should do. Seriously, why buy a new house when you have a perfectly good house unless you have a reason? We needed a house with a wow factor.

But I also need medical facilities. I have lots of doctor appointments. I really don't want to drive two hours to every single one. Then there was a new article on a hospital that opened a new facility for primary care and was continuing its expansion. That's what I needed. And expanding medical center that could provide me with the care I need. Awesome. And we found the perfect house with the wow factor that should last us 20 years. We packed up and moved.


New state. New hospital. New laws.

Its so confusing. But I am working with everyone to help figure this out for me. I have several new doctors. I will have more new doctors. But I feel okay about my health. I have been pretty stable for the last years. I brought many medical records to my new doctors. I was given a six page form from my PCP and added another four pages of details that didn't fit on their forms. I told them that my old doctors are happy to talk to my new ones.

But here's the difference. My new PCP moved to Maine a few years ago. In the state she  used to live in she coudn't prescribe several of my meds. But then she found out she could. But I have to see her every 3 months. But my other doctors I can see a lot less often. 

I can work with this but I also need to learn to talk to new doctors. And they got a new phone system. I hate going to doctors. But Im still here so I'm okay.

This has been  a LOT of CHANGE in the past six months. I don't even notice it as much but on some level I realize they need a lot of my information. 

Thursday, February 18, 2021

Life Moves Us

We are moving to Maine in a few weeks. I am looking forward to living in a house with no stairs so I can get around easier. I will have a weaving/crafting/knitting studio as soon as my husband finishes it - the building is there but needs insulation etc.

The scariest part of moving to Maine is I have to get new doctors for the first time in 40 years. Well its been 39 years and 8 months. I called up to get us new doctors and set up first appointments. They sent us paperwork. Everywhere it said things like: 'surgeries', 'ailments', 'medications', 'specialists', etc. I said 'see attached'. 

I called again and asked and the regular new patient appointment is 30 minutes and 'the doctor will book additional appointments as needed'. The last time I got a new primary care, she split up my annual physical into 2 hour long appointments. I was healthier then.

Okay, why move? Because the quality of life will be better. Maine has way fewer cases of Covid. I can't get a vaccine any time soon here so I hope by the time of my new physical, I will be able to get an appointment then. 

Sunday, October 18, 2020


Now that we are more than six months into this 'stupid' pandemic, the proverbial 'they' say that more people are suffering with pandemic fatigue than anything else. Basically we are fatigued with this pandemic.

I have sort of been ignoring the damn pandemic because I don't have that much of a life anyway. But I have been following the rules and trying to live my life without driving myself or my husband crazy.

And then....

I got a cold. And paranoia set in. 

Is it Covid? I took my temperature, 99 point something (which is on the high side for me because usually I am around 97 point something). I think not bad, I'll take a tylenol. And stay in bed, have soup, and watch lots of bad TV. 

Then I start thinking: where have I been in the last 14 days? Too many places. If I have Covid, will I be branded as a 'bad' person for the rest of this damn pandemic because I went lots of places in the last 14 days? I must be a horrible person for doing all that 'traveling' and exposes all sorts of people to my germs.

Then my next thought is "I went to the grocery store (a real swamp of germs that late in the day) Thursday afternoon and probably got exposed to someone's non-Covid cold". Presto, with my immunocompromised body, I started showing symptoms within 24 hours. 

So of course I posted on 'height' of social sharing, Facebook, that I had a cold during a pandemic. An amazing number of people actually read my post and many of them told me to get tested. 

So I started thinking more. If I do have Covid, I will probably die from it because I am so immunocompromised. So more paranoia. Will I die from this stupid virus? Not a good thing. 

Thus, I put in more deep thoughts and contacted a local clinic to see if I meet the criteria of needing a Covid test. I put in my symptoms on line. I spoke with a person who asked more questions. Finally I spoke with a doctor. His reply at the end of more questions (have I lost sense of smell or taste?), it is my choice to get a test or not. 

I'm going to get a Covid test. I really doubt it is Covid because it just feels like another cold to me. But because of my concerned friends and my personal paranoia (and the fact I really am not interesting in dying), I am getting tested now. Results in 24 or so hours....

Monday, October 5, 2020

Trying Something New

 So as you know I am not a very healthy person. In fact, I might be one of the least healthy people on the planet who is still alive. 

In late 2008, I started experiencing back pain. As usual I ignored it for several months, until I realized that I was living on tylenol and advil. That sent me to my doctor, who sent me to a orthopedic guy, who took xrays, and told me a bunch of different things. He also gave me some drugs and sent me for PT. But I still had a lot of pain. Eventually I ended up at a pain management doctor. 

Sometime in there, I thought, maybe I should try pilates or yoga to help my back. My pain management doctor told me no. So I listened to him and didn't try either. 

A few years later, I got sick of him just changing my meds with out telling me why so I got a new pain management doctor who communicates with me. I have learned over the years, that things that I should not do include twisting my back and standing for too long. I feel comfortable with living without twisting my back and standing too long.

I went to a good gym for close to ten years. I got a lot of flexibility and strength out of that. Then along came this (stupid) pandemic and the gym closed. I am not going back to the gym even though I could. Too many people breathing hard and I am immunosuppressed so I am very susceptible.

When the pandemic started, I took my mother's exercise bicycle and started riding it for an hour 3 times a week, just as if I was going to the gym 3 times a week. But I wanted some other types of exercise for core strength and flexibility. 

I have a knitting group at a cancer support center which went completely remote in March. They offer yoga classes. Last week I got the new schedule for events at the cancer support center and decided its time. 

I signed up for yoga. I actually signed up for two yoga classes each week for a month. Yep. I did it. The first class was this morning. I made a point to get on early so that I could talk to the instructor and tell her I can't twist my back or stand for too long. She said that was fine and to do what I could. I skipped all the twisty stuff. I think I did okay. I mean I tried. I didn't twist.

I just have to wait to see how I feel tomorrow to see if I can move. 

Sunday, July 19, 2020

The Damn Cough

At the end of February, before Covid, I sat next to someone who told me she was fighting a cold. Well I got that cold for the next week. I then had a basic cold for a week since I am immunosuppressed. (I did not have Covid symptoms of lack of smell, fever, body aches, sore throat, or trouble breathing, etc) I felt like crap, spent a lot of time in bed, but I had to plan and go to my mother's celebration of life which I did. I finally felt better after about 9 days. 
But I had a cough afterwards. It would mostly bother me at night. And it still does. That is nearly 5 months later. I still have a cough.
It is annoying me. It annoys me enough normally I would call my primary care doctor and go to see her. But with this current Covid stuff, I am concerned.
What if the cough is a follow up from Covid that I had without knowing back then? I am petrified that will be the case. I mean what if my doctor wants one of those nasal swabs that tickle your tonsils? For some reason this really terrifies me for some reason.
The rational side of me says that it was not Covid because I hadn't traveled. No one I know has traveled. The group of people I was with are people dealing with cancer. I know that it was very early in the Covid era - before it was spreading around. So the chances it was Covid are very small.
But the damn cough is really annoying me. I get up most nights to take some guafeisin so I can sleep. So the rational side of me tells me I need to call my doctor. I promise I will this week.

Friday, June 26, 2020

Cancelled Due to Pandemic

Life as we know it has been on hold for a while. Like since early March. Everything has been cancelled due to the pandemic. We are sick of it. But some of us still get sick. Now the doctors are concerned that people who are getting sick aren't going to the ERs when they should due to fear of Covid-19. This is a real problem. If you need medical care, you should go get it. 
Unless you are me. None of my doctors want to see me because I am immunosuppressed. I thought I was immunosuppressed due to my RA treatment but the doctor I spoke with today told me that its something about having RA (and some other ailment that I can't remember - maybe Lupus) screws with your immune system so you are super immunosuppressed. How wonderful. 
I am feeling neglected by my doctors in some ways. I haven't seen a doctor in months - a very unusual event for me - other than by video or over the phone. I haven't had any of my regular blood work - I usually have RA blood work done every 6-8 weeks, thyroid bloodwork every 6 months, and fasting bloodwork was due in May. No one is concerned about my missing blood work either.
And it would be wonderful if my pain management doctor would schedule me for steroid injections to help with my back. But I sent him a message a few days ago and I haven't heard from him. That would be nice but that would mean going to the hospital where no one wants to see me. 
So I am going to hang on to my medical schedule and hope it doesn't get cancelled due to the pandemic too.

Friday, June 19, 2020

Okay, (I Wish) That's Enough Quarantining

But its not enough. We need more quarantine. We still have lots of people getting sick with Covid-19. But now they are in new places than before. So areas that thought they had escaped the Evil C-19 are now finding that they did not escape and are seeing huge upticks in positive results. 
Yes there is the mentality of "close your eyes and put your fingers in your ears and it will go away" as Anderson Cooper stated earlier this month regarding the Trump administration's statement to stop testing so we don't get anhy more positive results.
I get that. If I could I would close my eyes and stick my fingers in my ears and erase my entire medical history. But I can't. And Trump can't. (But this is not a political blog so I am going to shut up on that one for now.)
The point is we are all really sick of this pandemic quarantining. We want to do normal things - like go out to dinner, go shopping for new summer clothes, or send children back to school. But we still need patience. 
In case you forget about neeeding more patience, go read the news about the 16 women who went out to a bar in Florida and all ended up with Covid-19 or in New Zealand where they thought they had erased Covid, now has new cases or in China more cases appear but they claim its under control. What this means is even though we thought Covid was getting under control, but its not. Its still around. 
So we still have to be patient and wait for a vaccine, better treatment, etc. 
But that's for all your normal people. 
I am, as many others are, immunosuppressed due to my health. This means when a normal person gets a cold, I am sick in bed for at least a week. My thought is that if I got Covid, I would end up.... I don't even want to think about it. I have developed a huge fear of the idea of a mechanical ventilator.
So you may think you need to be patient but I need to be really patient. Like I think I will need to live like this for quite a while.
Examples are that I am not sure when, or even if, I will ever get on a plane again unless there is a vaccine. It could be a death sentence for me, and a lot of other people. 
We need more quarantine. We need more patience. If we do start going out and stop wearing masks or social distancing, we need to make sure continue to protect those of us who need more quarantine. So if you do go out, please remember there are people who are still stuck at home for more months and do your best to slow the spread.. 

Time Flies When You Aren't Having Fun

Over a year ago, I came up with the brilliant idea that my husband should retire in the fall so that someone who is supporting a family coul...