Saturday, December 31, 2016

The Years

In the end, it's not the years in your life that count. It's the life in your years. --Abraham Lincoln

Today I was watching some old Blue Blood reruns. At the end of one episode, that quote was recited and rang a bell with me.

We need to make the most of our years.

Friday, December 30, 2016

Another Year Goes By

We are at the end of another year. This one for the country has been filled with amazing ups and downs and controversy and more controversy. All I know is I have survived another year, even if I have yet another horrible cold. But what I don't know is how did I do on last year's resolutions?

Do you keep track of your resolutions each year? I know I never do. But I'll get back to that.

So each year, I make resolutions so that I will work on making changes in my life. I have a feeling, in fact, that I make the same resolutions every year. I honestly wouldn't be surprised about that at all. I think I probably want to lose weight every year.

People are creatures of habits and habits can be hard to change. Take anything from losing weight to eating more vegetables. You are good for the first few days and then fall off the wagon. And then there you are again. We all create our own vicious cycles.

You weigh yourself and go on a diet because of the shock you just got. You start to lose weight, feel a bit better, and weigh yourself again. You have gone down a couple of pounds so you celebrate by eating a jelly doughnut and a skipping your salad for a couple of days. So you weigh yourself again, and start over again.... and again and again....

Next time, don't weigh yourself at all (leave that for the doctor's office and their big fancy scale), go on a good diet and don't have a jelly doughnut for six months when you can wear pants two sizes smaller even on your 'fat' days. Wasn't that easy for me to write?

So there you have it. I wrote the problem the solution and still haven't done anything about it. Now I am going to peek at what my resolutions were for last year (because I have a blog this is actually easy). This was last year's resolution:

"I have a resolution finally for the new year: I will stop using my blog as a place to whine, especially about moving. I use my blog to write about issues which matter to me which recently has included a lot of whining about moving."

And the year before which was actually a repeat of the year before that:

"Younger
Thinner
Taller"

So I think by now, I have gotten past the younger and taller part but am still working on the thinner part. But now I have to get rid of my own vicious cycle and leave that part out. That is the part that should be my resolution. Skip the diet part and get straight to the vicious cycle. 

I know part of that: I can't exercise as much because of my health issues. I can't exercise more because of my health issues. My health issues can cause me to be depressed and stress eat. So it all goes back to my health issues.... 

I am way too far off topic here. But not really. Another year has gone by and it is behind us. It is time for me to move on to get past my personal vicious cycle. It is time for the country to get rid of its own vicious cycle of division and hate and to move on to working together.

Thursday, December 29, 2016

Why I Don't Blog About Breast Cancer As Much Any More

I have been pondering this one for a long time, years. I used to blog about my breast cancer crap (and if it's cancer, it is crap) all the time. I mean, ALL the time. Because breast cancer was the center of my life. I was going through treatment and coping with diagnosis and all the fun stuff going along with it.

So since I got through treatment and moved on to other ailments, I have not blogged about breast cancer as much. I have thought a lot about this. I have even considered renaming my blog.

After a lot of thought, I have decided the reason I don't blog about breast cancer is that I am trying to bury all thoughts of breast cancer and not think about it. Yes, that's it. I am being a wimp. But its called me coping with breast cancer.

There are five degrees of grief, of us learning to cope with our own mortality - whether it is death of a loved one or our own mortality when faced with life threatening illness. They are: denial, anger, bargaining, depression and acceptance. So my way of coping and acceptance are burying my breast (and thyroid) cancer diagnosis and pretending they aren't there.

This way I allow myself not to think about my cancer diagnoses is by ignoring them. Any potential symptom will be uncovered by my doctors at upcoming visits. Why do I do this? Am I supposed to be hyper-vigilant about any potential cancer symptom for the rest of my life? How could I live that way? I couldn't.

So being a human being, I do what I can to cope. I spend my time pretending I don't have them and assuming that my doctors will discover anything that could be wrong with me. I will fill them in on any aches, pains, and other symptoms that I have but I will not stress myself about it and will pretend they aren't there until I see a doctor.

This is why I don't blog about breast cancer anymore.

Wednesday, December 28, 2016

Germs and RA

I keep whining about this but its true. Germs and RA do not work well together.  Here's someone else's story:

"When you have RA, the last thing you want to deal with is germs. These germs that are airborne are a recipe for disaster. I want to tell those that refuse to cover their mouth, to please do so.
The last thing I need is to get more sick when it can be prevented. Wash your hands, germs are on door knobs, money and all that we touch. Let’s be mindful in this season of more germs that they easily spread. My desire is to be in great health this winter. I know first hand, dealing with RA and a real bad cold at the same time is miserable. I’ve had times when I couldn’t sleep. My noise was stopped up and a lot of congestion. I was in bed for days. I noticed I was not able to get rid of the cold as quick as I could before I had RA. So let’s not spread germs, because for some illnesses such as RA, it makes for a miserable mix. I know from experience it is not a quick bounce back. It took me about 3 weeks to recover from a very bad cold."

You can see her full story here.

So I am home with a bad cold. Today was the day my family was going to celebrate our family Christmas. My brother was going to come in last night to stay until the weekend. But since I am sick, they did not. 

The last I heard, and I am staying out of the decision making, is that my brother might come in today and stay in a hotel (additional unneeded expense) and my family will celebrate without me tomorrow. They were going to postpone it until MLK weekend but my niece will have gone back to school by then and my other niece has a concert that weekend so it would have to be Presidents Day weekend. 

This is what happens when you get sick with RA. Family events get  postponed and celebrated without us those without colds. Kids miss out on family Christmases. All because I was exposed to a germ ten days ago.

And no I am not feeling any better. I barely slept last night because of my cold. I did get some cold medicine but there are limits to what I can take because of allergies and other medications. 

So again, if you have a cold, stay home and stop exposing everyone.

Tuesday, December 27, 2016

Resolutions

As the year end approaches, I contemplate my wishes for the coming year. I may be a bit different than most because of my health but here goes:
  • I wish for another year without a cancer recurrence or new diagnosis.
  • I wish for another year without new significant health issues.
  • I wish for approval for social security disability insurance.
I don't think they are big desires but they are important to me. Like to be healthy-ish would be nice. And the disability insurance would help my wallet.

Monday, December 26, 2016

A Request For All Those With A Cold

Please, a request to anyone with a cold who wants to go out and celebrate the holidays: Please DON'T!

I have a compromised immune system and met some friends for brunch last weekend. One of whom, the one sitting next to me, had a cold and said she had had it for a few days. 36 hours later I started feeling like I had a cold too.

Because she didn't want to stay home and take care of herself, now I have a cold and may or may not be able to celebrate the holidays with my family. Never mind all the other people she has exposed to her cold. She went to work every day except one that she took off. She went to all her family get together's including school sporting events where she was in big crowds.

Where I used to work, there was one guy who always came to school when he was sick. Finally I said something to my boss who said something to him. When one person has a cold for a few days, I have one for at least two weeks.

So, if you have a cold and want to join in the holiday celebrations, please give the biggest gift you can to others, just stay home and don't risk sharing your germs.

All of us chronically ill people with compromised immune systems thank you.

Sunday, December 25, 2016

Happy Holidays!

Today my husband and I (at my husband's suggestion) are spending the day at home together. We chose to spend the time without the rest of the family because:
  • We wanted to spend time together and enjoy the holiday in our new house.
  • We went out to dinner with my family last night and my brother and four children are showing up Tuesday night and we are having a big family dinner here for 12.
My husband is the smart one. Its a great idea. We even went for a walk. We are enjoying the prechaos calm (think calm before the storm). 

What is a holiday supposed to be? A day where you enjoy those who are close to you and celebrate the seasons - and maybe have some good food as well. That is what we did today.

Saturday, December 24, 2016

Stop Hiding From The Holidays With Ailments

Yesterday I posted a list of a holiday to dos:
  1. Be present, don't buy presents
  2. Wrap someone in a hug, instead of wrapping gifts
  3. Send love, not gifts
  4. Donate food, don't shop for it
  5. Make memories, not cookies
  6. Be the light, instead of hanging lights
Then I started thinking (sorry). I know I am guilty of not being present at holidays. At Thanksgiving, hosted here, I got tired and ended up lying down in our bedroom for long enough that my mother came down to lie down for a minute and talk to me because I was gone so long.

I really have limited abilities and get tired or end up in pain and need to rest. Normally, I would sit down and let everyone else do all the work. But if we are hosting, I never get to sit down because people keep asking for something so I have to get up. Now that I have had a chance to think about it I realize that I am not being present. I am hiding away.

So I have to come up with a plan. First of all I will talk to my husband and siblings because I know I can't do everything. I can also enlist one of my nieces and nephews to help.

I think I have dealt with my health for so long that I have learned to hide away so much that I start hiding away too soon. I need to work on staying out with everyone else and relax and let everyone else do the work and delegate.

That is actually pretty funny because last week I talked to an old friend who was stressing about the holidays. I told her I thought she should delegate part of the work to her husband and let him do it. I ran into her in the grocery store yesterday and she was shopping with her husband and he was doing the work. She had delegated and was very happy to do so. I have to take my own advice.

I (state your name) will stop hiding on the holidays and delegate instead.

Friday, December 23, 2016

Thursday, December 22, 2016

Doctor Search


Dana Farber Cancer Institute just released this list of what to look for in an oncologist. I just think that they are things we should look for in all doctors.

I have ditched doctors who didn't have all these:
  • Communication - why have a doctor who doesn't talk to you.
  • Specific expertise - I wouldn't want a dermatologist to treat my rheumatoid arthritis but I would want them to remove funky looking moles. I would also want my oncologist to specialize in breast cancer.
  • Willingness to collaborate - this is exactly why I am getting a new pain management doctor: he won't let his patients talk to someone else and then go back to him - meaning no second opinions if you are his patient.
  • Access to new technologies - if my doctor is not using the newest technologies to treat me, I don't want them. I had a gastroenterologist in the mid 1980s. At that time he was the head of the department. I went back to him around 2009 and he was still writing paper notes, and only looking at his hand written notes. 
  • Emphasis on personalized treatment - I am not a number. I am an individual. I have a million (or so) ailments and I want a doctor to take all of those into account.
  • Focus on the whole person - please don't just treat my breast cancer but look at the rest of me and suggest things that will benefit my entire body and think about my emotions and mental state.
  • Someone with your style - actually, someone who will adapt to my style. I know how much information I want to hear and will ask you questions. I expect educated answers and references to where I can find additional information.
  • A good team on their side - its not just an individual doctor that treats you. You have to deal with everyone from the person who calls you to make an appointment to the nurse who checks your vitals when you get there and answers questions when the doctor isn't available in person. 
This is a good list to review and consider when looking at any doctor.

Wednesday, December 21, 2016

Women Doctors Are Better

It took a study but the truth is out, women doctors are better than men.

I have always preferred women doctors. I just assumed it was because my pediatrician was a woman. The first dentist I went to was a woman - I have these vague memories of going to see her in her Boston office and getting erasers shaped like animals afterwards. If I get a choice, I usually prefer a woman doctor. Currently I have women doctors for: primary care, oncologist, endocrinologist, dentist, periodontist, therapist, meds therapist, rheumatologist, eye doctor....

"People treated by a female had a 4 percent lower relative risk of dying and 5 percent lower relative risk of being admitted to the hospital again in the following month.

To explain the discrepancy, the researchers point to past studies that have shown female physicians are more likely to provide preventive care and psychosocial counseling. Female doctors are also more likely to adhere to clinical guidelines."

I think the biggest part of this is the level of compassion I receive from these medical professionals. 
I think women are more compassionate as a rule and this compassion is also less likely to come from male doctors. Preventive care and counseling are very important. Clinical guidelines may or may not be as perfect as the article goes on to add:

"...adherence to clinical guidelines “does not always equate with quality or value of care.”

But the point is there. 

Back in the old days, women were not allowed to be doctors. But the times have change, go find a woman doctor and get better care.

Tuesday, December 20, 2016

Loneliness and Isolation

I find our new house provides lots of loneliness and isolation. I knew it when we moved out here and I stopped working that my life would be very different. But I don't think I realized how different until now.

Last winter and spring I was busy getting settled into our new house - and painting about half the rooms in the house. Then I was busy gardening and being outside. Then it was craft show season. Now not so much. I'm not going to finish painting the house until after the holidays but that only takes up so much of my time.

Our neighborhood is full of people who work. The woman on one side is home with two small children to keep her busy. The woman on the other side is retired and never seems to be home. I have taken time to get to know her but I don't think we have that much in common.

Most of my friends work full time or nearly full time so they aren't available during the week, or they are not very local and a good drive away.

My Christmas presents are all purchased. I have to put a few more in tissue in gift bags. I am waiting for a couple last things. I have one idea of one thing to make and that's it.

I love my husband but he isn't here all day long. He works full time and then comes home and does his own thing. This is important because he needs time to relax. When he's not here, he's busy, even if I am not. So I can't expect him to focus on me the second he walks in the door until we go to bed at night. I can't count on him to fill my time when he is home. But the real problem is when he is at work anyway.

Yesterday I was at the gym and then came home and was then home for the day. The cats are not much for conversation. So its just me and and bad TV all day long.

That is not a good combination. I need more to fill my time and interact with other people - other than the gym and doctor appointments. Basically I need a life. A new life.

So that is my focus. My first experience with this kind of isolation was during breast cancer treatment. I was home and I bored. My husband was at work and it went on for months. I was lonely and isolated. Any other time I was home for extended periods of time I was healing from something and got better. Now its just me.

I have options I can turn into Suzy Homemaker but that's really not me. I hate housecleaning. I have been cooking more (but that's not good for my waistline). I could get healthy - but we know that's not going to happen. 

My health is the huge limitation in my life. Physically I can't do much more than I do now. That is my problem. 

The problem is I know what my problem is but haven't quite figured out how to fix it. This week my calendar is pretty empty except medical appointments and the gym. Next week we will have house guests for several days. The week after - I need a plan. I need friends to get together with. I need projects to do. I need to figure out how to get out of the house and do things (within my limitations).

Monday, December 19, 2016

Peer Support

When first diagnosed with breast cancer, I started going to support groups. And I was very appreciative of what I learned from the other women in them. I also found support in online communities which helped me even more. You go to your support group weekly but the online groups were available 24/7.

I can't tell you how much I learned at my support groups that helped me understand my treatment protocol, what to ask my doctor, and more. The peer support was very different from what I learned from my doctor. In some ways it was less invasive but more personal than my oncologist and his team.

Now a hospital is using a peer support group to help promote communication across different groups and to help reduce differences in rates of screening and survival, particularly in Latina/Hispanic women as this hospital is in New Mexico.

I think this is one of those 'doh' moments that someone should have thought of sooner. There are many other peer support networks out there. But to have one at a hospital to help improve the physical and emotional health of those with breast cancer, is amazing.

I hope many other hospitals try this type of activity for those with breast cancer or other ailments where there are disparities.

Sunday, December 18, 2016

Don't Go Quietly

Somewhere out there is a birthday/friendship card about the friend you want is not the one who will bail you out of jail but the one who is sitting there with you in jail talking about how much fun you had. I want to be the instigator who got us arrested for something like 'public embarrassment' and I have a couple of friends who would be sitting in jail with me.

I have two old friends who might be sitting in jail with me (you know who you are - don't deny it). One is a friend from college and one is someone who I started working with in the mid-1980s - you know who you are!

Back in 1981 I was told I had thyroid cancer and I should take it easy for the rest of my life, get plenty of rest, eat right, blah, blah, blah. I then thought about it and decided I would not play in traffic but I wasn't going to stay home and do nothing. (Hence, 10 Club Med vacations by myself but that's another story.) I have also done a lot of other travel, adventures, and finally some medical mis-adventures.

But I have also learned to cultivate a list of heroes, of people who I admire who have not gone quietly. Just last week, I learned about another person who did not go quietly. That is how I want to go. I'm still working on the details.

Do not go gentle into that good night
Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

Saturday, December 17, 2016

Doctors Should Speak Clearly

I really dislike a lot of doctor speak. They say things like 'with your medical history we need to be sure' or 'that really needs more research before we can tell if it would be right for you'. Then they try to add explanations about things that include the words 'that's a possibility' or 'we could consider that'.

What exactly does the word 'consider' mean? I had never really thought about that until I read this blog post that was mentioned on Facebook and then I got really irritated. If a doctor says they will 'consider' a potential treatment protocol? Does that mean they want to go look something up about it or they want to prolong my agony? Why can't they just say there's a new option for you that looks pretty good.

I think doctors get trained so much (and have to keep potential malpractice suits in mind) that they hesitate to speak directly about anything. They feel the need to insert all the fine print you see in a print ad for a medication to cover all the potential side effects or 'adverse reactions' into their words. Can't they just drop the doctor speak and talk clearly to a patient.

Its just you and your doctor sitting in an exam room or their office, and they have to speak in circles so there is no chance you could ever sue them for anything. Its unfortunate that some people feel the need to sue too quickly and even more unfortunate that some doctors abuse their power and some patients suffer as a result. The rest of us patients pay the price for that in the resulting doctor speak.

I think if doctors spoke clearly to their patients and talked to us like a person instead of as a potential lawsuit? And if they didn't use the words like 'consider' or 'possibility', wouldn't we all be better off?

Friday, December 16, 2016

You Know You Are Unhealthy When....

Your calendar is full of medical appointments and you never get to see your friends.

I used to work with a woman who told me that I was unhealthier than an entire floor at the local hospital combined and she didn't even know about my cancers .

But you really know when you are unhealthy when you are in a room full of people with cancer, mostly stage IV, and they consider you unhealthy. That is what happened to me yesterday.

I'm just trying to keep my sense of humor through all this.

Thursday, December 15, 2016

Living Without Cancer

I have had further thoughts on my post from the other day on Not Talking About Cancer and then more thoughts. As I wrote about enjoying not talking about cancer, it really made me think. What if you didn't even have to consider talking about cancer or not talking about cancer? Because you had never had cancer?

I think this is the part that I am stuck on and really struggle with at times. I have never been an adult with out cancer. This is very difficult for me. I went from being a fun loving, college freshman to a cancer person. (This means if you got to know me after August 1981 you never knew the pre-cancer me.)

If you have had cancer, can you think about your life before and after cancer (and none of that 'new normal' bullshit) how have you changed? How has your cancer diagnosis changed you? What is different about your life?

I couldn't tell you what is different about my life, before and after cancer. Whatever equilibrium I reached after my first cancer diagnosis, it was shattered by my second one. I do know that having cancer once before, gave me some additional experience for my second diagnosis, but even then I wasn't prepared.

No matter what I think you are never really prepared for life as a patient instead of life as a person. My big struggle is to learn to cope with this in life. Perhaps this is why I have therapy?

Wednesday, December 14, 2016

Making The Change

Okay, I am going to do it. I have been pondering changing my pain management doctor and I have decided today (I am finally going to remember to) make the call. While I personally like my old pain management doctor and think he is a decent guy, I question the care I have been receiving.

I don't necessarily think it has been bad care. But I really want a new set of eyes on my pain management treatment. I want a new doctor to look at what I have and what hurts and then I want a new set of recommendations.

After nearly seven years with the same pain management doctor, I feel he just adds more and more meds and doesn't necessarily take anything away. One time he did take me off Lyrica (and later put me back on it), he told me I could just stop taking it and switch to something else (that I can no longer remember). That was probably the worst two weeks of my life. I was later told that I should have been told to cut down on Lyrica over a three week period and then start the new medication. He was later surprised that I had any issues with the transition and basically brushed it off.

He has also been a bit skeptical of any of my requests for new scans more than five years after the original one.

Today I will say good bye to him and schedule a new appointment with a new pain management doctor. To help with this transition, the pain management department has added a new doctor which gives me more options.

I am not a big fan of doctor flipping but realize sometimes it is in my best interests to do so.

Tuesday, December 13, 2016

Talking About Cancer, Or Not

I have a lot of friends these days who have had cancer. And then I have friends who have not had cancer but sometimes we still talk about cancer or my health. But then I have friends who do not have cancer or any big ailments and don't really know about the disasters of my health so we talk about other things. Like life.

Recently, through the wonders of social media, I reconnected with two old friends from high school who I hadn't seen in decades. I have sort of told them about all my health issues. But definitely not all of them. I have gotten together with one or both of them a few times.

I got together with the one who I was closest too in high school for coffee a few weeks ago. An hour and 45 minutes flew by. We talked about her mother and her siblings. We talked about her daughters. We talked about life in the area - she lives about a mile or so from us.

We decided we need to get together more often and made plans for our next meeting. And we never talked about my health. It was really nice. I need to do that more often.

Further proof there is life outside of cancer crap (and if its cancer, its crap).

It also made me think that I need to do that more often. I need to have conversations that allow me to focus on my life outside of my health.

Monday, December 12, 2016

Another Anniversary

I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.

We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).

Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.

Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.

It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.

I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.

Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...

In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.

This is an anniversary to celebrate - when I first learned about online patient support.

Saturday, December 10, 2016

Vanessa Bayer

I can tell you I am not Vanessa Bayer's biggest fan, because I honestly do not stay up until midnight to watch the show (waaaayyyy past my bedtime). But I am suddenly a hug fan of her openness regarding her leukemia diagnosis.
I was getting my hair cut this week and had a chance to catch up on the latest magazines, including People

"When Vanessa Bayer was just freshman in high school, she was diagnosed with leukemia. While the news was a shock for her and her family, Bayer says her cancer battle ultimately led her to a career in comedy.

“I wasn’t really that scared,” Bayer says in the latest issue of PEOPLE. “My dad is a really funny guy, and we would make jokes about my leukemia. When my friends would come over we would joke about it too. It’s sort of messed up out of context, but it put everybody at ease. Being sick is the reason I went into comedy.”"

She went from being a Make-A-Wish kid to a career in comedy and she's still here. 

Also, I really want to say that I am so happy to hear about another person who had cancer while young and is being very open about it. I think that the world is a better place if people do not keep their illnesses quiet. There is nothing wrong with talking about your medical ailments. And you probably are a lot healthier if you do talk about your medical issues. 

But anyway, I am now one of her biggest fans.

Friday, December 9, 2016

I Am Aggravated

My body is not cooperating. It keeps on bringing areas to my attention that are not cooperative, i.e., causing pain or other discomfort. I am not happy about this. I am already in PT for one area of the body that has expanded to a second area. I am going back to the knee doctor on Monday to talk about my formerly 'good' knee which is causing way too many issues. My 'bad' knee isn't going to be a good substitute for it.

Also, my fatigue levels are not doing me any favors. I was so tired this afternoon that I didn't put away the groceries - except for the most perishable - and left them for my husband so I could go lie down.

This does not make me happy. The roller coaster of cancer is bad enough, actually it probably the worst. But the fatigue and pain roller coaster isn't much better. I am not coping well. I am whining.

And it snowed twice this week and we are due for more snow Monday and Wednesday of next week. This makes me less happy and more aggravated. Its time for my body to suck it up and get back in lie.

Thursday, December 8, 2016

The Idiots At the TSA in LAX

Did you hear the story about the woman who was basically groped and abused by the TSA at LAX? Sure it made a tiny story on CNN and now they just show the video with the title "Breast Cancer Patient Livid After TSA Screening'. Then I went and read the full story on the woman's blog

The TSA has issued a small apology but apparently they don't get it. Even their supervisor in the video is pretty darn useless.

Seriously Deborah, the woman in the video, told the TSA agents she had breast cancer and they still didn't get it. Really? She is undergoing cancer treatment and you treat her like a piece of crap.

Wednesday, December 7, 2016

Getting Back On Track

This morning I actually feel rested. Actually I felt pretty rested yesterday morning as well. But my day got hijacked and I ended up spending several hours with my father taking him to a doctor appointment (broken second metatarsal in his left foot at age 88) and then x-rays, back to the doctor, and then home. And then home to our house. I was totally exhausted by the time I got home at 430.

But then I slept for close to 9 hours without waking up. So this morning I will go to the gym, then get my hair cut, and go to the library. Then I will stay home and finish what I never got to yesterday. I need to get back on track.

What works best for me is to go out and do things during the first half of the day and then stay home for the afternoon for the most part. I often need to rest in the afternoon so if I am out all afternoon, I lose that key resting time. This will also allow me to eat regularly.

If I skip lunch I have a tendency to eat a lot of crap just before dinner. Yesterday I didn't get lunch. My father and I kept asking each other if we wanted to get something to eat. We both said we weren't hungry so we never got lunch. Eventually, we decided we just wanted to get out of there and never ate lunch.

So when I got home after dropping off my father, it was 430. I first ate a chocolate chip cookie (which also has cinnamon, clove, oatmeal, and pecans - oatmeal is most important) and then I ate some cheese and crackers. Then, 400+ calories later, I decided I needed to wait until dinner. I should have had an apple or an orange and a big glass of water - you wonder why I struggle with losing weight.

I should be home by noon and can then do what I need to do. I need to be back on my schedule. Rest and food are very important and I need to schedule them in to my life regularly.

Tuesday, December 6, 2016

Wallowing

Recently I have been wallowing a bit too much. A few years back (2010 to be precise) I blogged about my wallowing rule - 3 day maximum. I have said that I have been whining but really what it is is wallowing.

What is the definition of wallowing? (since it is such a 'common' word. Most people probably haven't considered it since some word test back in high school):

wallow
verb (intransitive)
1. (esp of certain animals) to roll about in mud, water, etc, for pleasure
2. to move about with difficulty
3. to indulge oneself in possessions, emotion, etc: to wallow in self-pity

See? Definition #3 is exactly what I mean.

I think I have been wallowing in self pity, or the stress of more medical ailments.... I am not sure which one I prefer. If you add in lack of sleep and fatigue, ta da! You get wallowing.

After blogging yesterday, I realized I have been wallowing. I need to change my focus and be more positive. That has been hard to do when I haven't been getting enough sleep, been very busy with craft shows, Thanksgiving, house guests, concussion, and stress, depression, and anxiety, and new medical ailments. (But otherwise I am a very healthy person).

So my goals are to do less wallowing and do more positive things. Today are my first steps:
  • I am meeting a friend for lunch and a little shopping.
  • I am going to research CPAP machines so they aren't a looming mystery (causing stress).
  • I am going to fit more fun into my life. 
Being home and not having the benefit of going to work and seeing other human beings, I find I can easily let myself get depressed and then stressed which means anxiety. This is not a good combination. 

Now that we have been here for almost a year, I need to find more things to do to keep my sanity. I might breakdown and go to events at the senior center (even though I am too young to join). But I will pull my positive attitude out of my back pocket and stick a smile on my face to rejoin the human race.

Monday, December 5, 2016

More Ailments

So yesterday I blogged about my stupid sleep test, CPAP machines, and other whininess. I wrote that I have a new ailment, and what's another ailment. But seriously, another ailment? I don't really want another ailment. In fact, I am kind of sick of being sick and having ailments and more ailments.

Honestly I just want to stop having ailments, be a healthy person, and and have a life. I mean what do I do now? I go to the gym three times a week. I go to doctor appointments and PT now. I don't go to work. The only other places I go regularly are the library, grocery store, and knitting group.

I would prefer to do thinks like go to the beach, go hiking, go skiing or snow shoeing, garden more. I just feel like whining today.  And my car was sliding around in the snow.

I did my sleep test with the CPAP machine. The tech was happy to show me how much smaller the full face mask was that I got instead of the older bigger ones. I don't care. I felt like I was back in the hospital after surgery with the cannula and a combination of when I had an endoscopy and had to deal with that damn tube down my throat. Needless to say, I wasn't comfortable. I couldn't reach over and have a sip of water when I wanted.

I am not looking forward to when my damn CPAP arrives and I have to use it. Whine over. For now.

Sunday, December 4, 2016

Managing That Sleep Thing

Yesterday I got to my last craft show of the season. I got set up and then sat down in my booth to regroup before the show started. I was nice and warm and I started to fall asleep. At 9 o'clock in the morning. In front of hundreds of people. Several times during the day, I had to get up and walk around (and steal fudge samples from the booth next to me for the caffeine) to stay awake.

Why do I get so tired? One of the many reasons is the fatigue caused by my fibromyalgia (and its insomnia) and rheumatoid, to a lesser degree. It also turns out I have been diagnosed with sleep apnea which causes me not to sleep very well. (What's another ailment along with all the others? I have stopped keeping count.)

Because of my reports to my primary care that I get so tired sometimes I can't stay awake and  need to nap extensively, she sent me for a sleep test back in September. It came back with reports of Apnea. So tonight I am going to another sleep test, to try out a CPAP machine. (I am so excited, I can't wait.)

If I end up with a CPAP that has a giant mask on it, I won't be happy. I think the new ones have something under your nose only. I don't think I can sleep with a big mask on my face.

At this point, I would be happy with a good night's sleep regularly.

Friday, December 2, 2016

Breast Cancer Idiocy

First day of radiation treatment. I look like I'm about to make a run for it which is accurate. Radiation is frightening to me. Something about not being able to see the laser, see the treatment and having this machine moving around you just scares me. I'm sure I'll get used to it but right now.... I hate it. #radiation#radiationmondaysucks #stillfightinglikeagirl

This is a picture of Shannen Doherty, from '90210', as she starts radiation for breast cancer. Why do I call this idiocy? Her business managers allowed her health insurance to lapse. She had to sue them. Can you believe that?

What competent person would allow health insurance to lapse when they were responsible for other people's insurance.

A cancer diagnosis is stressful enough but if the 'moron's (and I use the term loosely) let your insurance to lapse, that would be insanity. Even though insurance regulations have changed so that the pre-existing condition clause is no longer legal, who wants that extra burden on you as well?

If you think what the costs of breast cancer treatment can amount to, that could bankrupt just about any one without insurance.

My message to Shannen: I hope you sued the pants of those idiots. And yes, you can make it through breast cancer treatment. Hugs to you!

Thursday, December 1, 2016

Expectations vs. Abilities

Sometimes expectations exceed abilities. But the real problem is when other people's expectations of me exceed my abilities. For example, last week we saw family friends and agreed we need to make it an annual event. It was suggested to me, actually I was told, that we should alternate hosting and my husband and I should host next year.

Um, that doesn't work for me.

I have major limitations on what I can and can't do. I do not go out much at night because I get too tired. We don't entertain much again because I get too tired. Or end up in pain.

No I am not meeting for drinks at 9pm. I am going to be in bed by then. No I am not going for a little walk because you want to. But we could go out and have a cup of coffee or you could come here and we could have tea. Anytime we plan on doing something, there always have to be an out - can I cancel at any time because I need a nap or to lie down.

I am learning to manage my expectations regarding my abilities, but it is clear I need to learn better how to manage other people's expectations.

When I worked, I was a big fan of managing up. This is where you train your manager to understand what you do well and what you are like. It is clear I need to learn to manage my friends and family. No one more trip down or upstairs is not what I am about to do anytime soon. Nor, once I have said I am exhausted, I am not going to stick around for another cup of tea. I am heading home to lie down.

I feel like a recording when I keep saying 'no' but I will have to keep doing so until they get it, which may be never. In the meantime, we will not be hosting an evening get together next year. Maybe during the day, unless I need a nap