Wednesday, May 9, 2018

Living With Limitations in the Family

This is the misunderstood side of my life - how I live with limitations. The other day, I visited my mother who also has RA. We went for a walk. I don't usually go for walks because I get plenty of exercise at the gym and going for walks isn't a great exercise for me. My back hurts and I get tired.

Other family members insist my mother go for walks too. They give her directions like if she would walk further she can get in better shape. She also should do her exercises, which she does. And she rides her little stationary bike while watching the news for 30 minutes every night. She gets plenty of exercise and really can't do more. I go to the gym three times a week and that's plenty of exercise for me.

My mother has had RA since 1989 and I have had it since 2012 (I think, maybe 2013). In addition we both have bad backs. She has had numerous back surgeries. I have just had cancer a couple of times.

With our health, we are not interested in getting healthier by working out because we are more interested in maintaining their health than becoming body builders. We just don't want to do too much and exhaust ourselves and then need days to recover and feel better.

We went for a walk. My mother had her rollator (brand is Hugo - She calls it Hugo, I call it Victor). We started our walk. We went down hill (because the hill is steeper if we go uphill) and we decided we would go until we felt we had walked enough and then would turn around. We went past the neighbors across the street, and then past the next house. At the third neighbor's mailbox, we turned around and went back. This is a neighborhood of houses with about 200' of frontage. It would be stretching it to to say we walked 1000 feet or 2 tenths of a mile. We felt that was ample. We thought the rest of the family would not appreciate how that walk was enough for us. And we don't need any more.

This summer there will be a family 2 week vacation. I have volunteered to take my mother up on the first day because neither of us work and we can start our highly energetic vacation which will consist of one activity each day (could be limited to going to the swimming pool) and a nap at 3pm daily. We also will not motivate in the mornings until after 9 am.

My husband was happy to hear that my mother and I will restrict ourselves accordingly.  Now we just have to come up with things to do within our limitations. Our plan is to have fun and not exhaust ourselves.

Tuesday, May 8, 2018

After Cancer Coping With The Instant Cancer Bond

So after you get diagnosed with cancer, it seems like everyone you know has cancer because:

You have met a lot of other people going through cancer treatment while hanging out at chemo, in support groups, your oncologist's waiting room, etc. That part is kind of nice. You find out you aren't alone in this cancer business. You have an instant bond with new friends.

Then you start hearing about all these other people who are diagnosed with cancer. You feel like you are supposed to be their friend too - because of that cancer bond thing again. Your cancer friends tell you about everyone they know when they are diagnosed with cancer because they have cancer and you have cancer so you can talk cancer all the time. And then it explodes, you meet and hear about more and more people with cancer and this cancer bond obligation doesn't quit. If someone you know  knows someone else with cancer, they expect you to become new best friends because you have that cancer bond so you must be alike.

If let unleashed, you will become swallowed by guilt that you are supposed to be friends with cancer people everywhere. But you have to learn to control the guilt so it doesn't swallow you.

I remember in college, I had thyroid cancer between my freshman and sophomore years. It was sort of an open secret - one some levels a lot of people knew I had cancer but no one talked about it. Back then cancer was evil and you were guaranteed to die soon.

Early in my junior year (I think), a male student I knew showed up at a party with another male student who I knew but not very well - who was now in a wheelchair dying from a brain cancer. It was a small school but we didn't have much in common. But now wait, we both had cancer so we could bond. How awesome! Not really. I felt it would be rude to excuse myself too soon because no one else wanted to talk to the guy in the wheelchair. But I also felt very much put on the spot because this instant cancer bond was there.

Finally I think I excused myself to get another beer or something. But I had felt trapped. Our mutual friend had trapped us together hoping to improve his dying friend's life by taking him to a party.

It was just awful. I felt guilt but there was nothing I could do. I did not want to talk to this guy anymore than he wanted to talk to me, we were not ready to compare cancer notes.

Another part of cancer coping is learning to manage that instant cancer bond. You can't let it suck you in so you get attached to every person in the world who has cancer (through that six degrees of separation thing) and bear their emotional burden of cancer. The guilt is killer.

While its nice to meet people with cancer and talk to them, you can't let it take over your life.

Sunday, May 6, 2018

Blogging Peeves

I love blogging and I love reading other people's blogs. But I have a few peeves (of which I cannot claim I have never committed) that just irritate me.

  • Select the correct word. There is a huge difference between they're, their, and there; and reign and rein; and its and it's. And I can go on. If you aren't sure, look it up on dictionary.com or thesaurus.com for help. It will really help people decipher what you are writing about.
  • Spelling, spelling, spelling. If your blog app indicates a word is wrong or autocorrects to something you don't understand, correct it. How many people's resumes include the term that they were the 'manger' of a department because the omitted 'a' in manager becomes manger. Or when I worked for a legal non profit the omitted 'l' in public. 
  • Punctuation wasn't taught as an optional part of studying the English language. Its important. Run on sentences are one thing. But if you type an entire paragraph without using a single comma something might be incorrect.
I am not perfect. My high school English teacher told me I would never be a writer. Through my career I have done a lot of editing other people's writings and have learned the importance usage, spelling and punctuation. 

After I write each blog post I usually go back and read it before posting. I have also been known to reread earlier posts and go back and make corrections.

A blog may be the result of a stream of consciousness that just pours out. But editing is usually required.... But keep writing and reading.....

Thursday, May 3, 2018

What A Stupid Policy

I guess I am back to blogging. I woke up this morning and read the paper. I could not believe this policy.

"Breast cancer screening is offered to all women aged 50 to 70 in England every three years; they are sent invitation letters to make an appointment for the test."

Apparently in the UK, patients are 'sent invitations' every THREE years for a mammogram. The parts that piss me off are that patients are only invited for a mammogram (shouldn't it be automatically scheduled by their primary care's - or another doctor's - office?) every three years. What's wrong with annually? Or is it too expensive for the NHS?

And they missed 'inviting' 450,000 women since 2009? How do you miss that large a group of people? Why couldn't they get their mammograms without an invitation?

What a crazy policy that was obviously set up by people who do not understand breast cancer. but never fear:

"Hunt apologized ‘‘wholeheartedly and unreservedly’’ for the suffering caused and promised there would be an independent review of the national breast screening program."

Maybe they should get a new policy instead.

Wednesday, May 2, 2018

Blogosphere, Here I Am

I'm finally back in the blogosphere. (I'm not sure I like that term but I'll use it). Blogging really helps me cope with life. Its where I share my emotions and thoughts and I've missed it. But I did need the hibernation.

Since the middle of February, when my father stopped his chemo and was gone in two weeks, until now, I have been on a roller coaster of emotions. I have been lucky enough not to have lost a family member since my grandmother passed away in 1983 so this was very difficult. In addition, my health made it more difficult for me to do much to help the rest of my family pull together the memorial service, help clean out my parent's house (my father was a packrat in many ways), and spend more time with my mother. We have also had visiting relatives to deal with.

Last week, we left town for a week to take a much needed break and went to a friend's daughter's wedding in the Midwest. The physical distance let me strengthen the break so I have returned mentally healthier but more exhausted from our travels.

However I have a backlog of emotional issues to work through. Which is why I am back to blogging. This blog allows me to work through my emotions and cope with my decrepit body.

I think my focus may switch from breast cancer for a bit but I'm back.

Thursday, April 19, 2018

Coming Back to Life

We are slowly coming back to life. We are all still very sad about my father's death. But his service is finally this weekend. 

At the last minute he decided to donate his body to benefit others. However due to his age, 89, and his cause of death, cancer (love those circulating cancer cells), options were limited. He donated his body to Harvard Medical School for research. They will keep his body for up to two years, but more like 12-18 months and then return his ashes to us. 

In the meantime we are having a celebration of life type service at a local Unitarian church this weekend. The service should provide some sense of closure for all of us and help us start to put our grief behind us. 

However, in the process of putting together the service, all of our emotions are riding high and we are stressed. There are a lot of opinions and thoughts that create some conflict. But I think we will be able to pull this together and start the process of healing. 

One of the reasons I did not discuss my father's health before his death is it was not my story to tell. It was his story. I may have alluded to caring for someone and taking someone to doctor appointments but for the most part I kept it to myself.

I am trying to take care of myself as much as possible. My knee continues to heal. My exhaustion continues to thrive. And when I miss my daily nap, I tend to get cranky and go to bed early. 

Wednesday, March 28, 2018

Hibernating, or Looking My Wounds

Often when I am extremely stressed, I find I need to hibernate a bit, and 'lick my wounds' as they say. For the past month, since my father died, I have been craving time by myself, lots of time alone. (Cats optional.)

The only day I usually have nothing on my calendar is a Tuesday. I have had something on my calendar every day since. Yesterday I was supposed to have a doctor appointment but it was cancelled because the practitioner was sick (instead of the patient being sick). That meant my calendar was empty. I got to stay home.

I enjoyed my solitude and got lots of things done - like laundry. But also I focused on my weaving and knitting. I got a big dent in a project. Now I can move on to the next project so I got a sense of satisfaction.

I enjoyed my day of hibernation. I may need a few more soon.

Living With Limitations in the Family

This is the misunderstood side of my life - how I live with limitations. The other day, I visited my mother who also has RA. We went for a w...