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

Wednesday, November 30, 2016

Post Cancer Survivorship

So Becky over at BC Becky blogged about developing her post cancer survivorship plan. (Personally, I hate the S word but will suffer through it for this blog post, using it as Becky's word not mine.) Other people call it their new 'normal'. I have found it very elusive. And basically think its a crock of sh*t. However this morning I started thinking (which is dangerous) while reading Becky's post.

I have no way of reaching a new normal because I was living my new normal, post cancer since 1981. I have no way of knowing what it would be like to be an adult without cancer since I was 19 and in college at my first diagnosis.

I always forget this. I am not sure how I am capable of forgetting this. I think I keep going on the bandwagon of let's find our new normal. But I was already living the post cancer 'new normal'. This begs the question is it possible to reach a 'new normal' for a second time?

Along with hating the S word I also have a problem with the blankety-blank 'new normal' concept. But in this case, I may have found the reason why I hate this so much because I have been living it all along.

So this begs the question, what would I be like without cancer? I have no idea because I never really had the change. So you are stuck with me and my post cancer self.

Tuesday, November 29, 2016

I Can Be Such An Idiot

Let me tell you how much:
  • Saturday I was at a craft show. At the end when I was packing up, I could not find my keys. Anywhere. I dumped out my purse twice, looked through everything I packed, checked all my pockets, several times. I was going nuts. I couldn't find them. I asked the few people that were left to see if any keys were turned in. Nothing. Finally, I was calling AAA and dumped out my purse again, and there they were. Talk about 45 minutes of stress!
  • Yesterday while leaving a doctor appointment I pulled out of a parking space and clipped the car next to me. In front of the owners. My car only got a corner broken off one of the hub caps. Their car has a scratch on the bumper. They are going to see what the damage is going to cost and get in touch with me. I was mortified. How can I clip a car when I am pulling out forward of the space I backed into. MORON ME!
  • Today I went shopping and after I was done and paid for my stuff, I couldn't find my keys. Again. I dumped out my purse again. I checked all my pockets. They weren't there. I asked at the desk to see if they turned in by anyone. The manager was helping me look for them. No where. He said I should leave my information at the front desk and they would contact me if anyone found them. Then I realized that maybe I left them at the register when I paid and I went back to check. They weren't there. But someone had found them outside and turned them in.
So how much of a moron am I? I blame chemo brain, fibro fog, and anything else I can think of in my tiny brain. 

I honestly believe that my ailments and all my medications cause memory and brain problems. Never mind aging, even though I am still 36. So if you want to be brainless, get ailments... They make life so much fun.

Monday, November 28, 2016

Self-Induced Diagnosis

Over the summer, I noticed (I thought) that there were a couple of moles on my face that were getting a little crusty from time to time. I resolved not to make a big deal out of them but to make sure I asked my dermatologist about them at my annual skin check. In the meantime, I should forget about them.

Of course I totally forgot about them because I have no brain these days. Then a few days ago I noticed they were a little crusty and reminded myself to ask my dermatologist. In the meantime, I self diagnosed myself with skin cancer, probably melanoma, Stage IV of course. I am so smart.

You wonder about this. I am an educated person. I know how to be rational and sane and take a pragmatic approach to my life, and its medical disasters. I have my share of medical ailments and medical disasters. I am not due any more.

But once that cancer crap gets in your brain, its hard to stop self diagnosing with more cancer crap.

My dermatologist said they were nothing and I don't need to come back for another skin check for a couple of years. My poor brain.

Sunday, November 27, 2016

Pre and Post Cancer

There is a picture of me around here from back when we were dating. My then boyfriend-now-husband asked me for a framed photo for an occasion birthday/Christmas done by a professional photographer. So I went to a local studio and had a picture done where I look young and healthy. The picture has been some place packed away for a while but now is featured prominently in his office, also know as our second bedroom.

As I walk by that picture these days, more frequently now considering where it is now positioned, I contemplate, me post cancer. In the picture I have long hair with natural blonde highlights. I was a good thirty forty (lets be honest) pounds lighter. I also look happy, healthy, rested, and younger (well it was 12 or 13 years ago).

But what really strikes me in the picture is changes that have ensued. Since then, besides getting married, I have been through a cancer diagnosis and the ensuing roller coaster, gall bladder removal, numerous back procedures, and diagnoses of degenerating disks, fibromyalgia, and rheumatoid arthritis. I have also battled things like depression (and you wonder why?) and anxiety (figure that one out).

At the other end of this ordeal, I am fighting the battle of the bulge in a serious manner. My hair some how lost its ability to get natural blonde highlights when it grew back after chemo. I now keep it short. I used to have long hair because I was too lazy to go to the hairdresser regularly.  I never used to get my nails done, but their importance grew after I lost several in chemo.

The pre and post (second) cancer me are very different. My life has changed in many ways. I am happily married, I do not work (because of my health). And I cope with my physical limitations, which are not all due to cancer.

We made big changes in our lifestyle. We moved further out from the city because I don't work and I needed one floor living. This was a very positive change. In addition, I have focused on learning more crafts - crochet, knitting, and now weaving. I also started my knitting group at a cancer support center, another positive change. I need to focus on more positive changes in my life.

My life is so different than what it was. The good changes are getting married, living in a one floor house, and learning to be more creative. I wish I had not gone through the cancer crap and other medical sh*t.

I do not consider this a new normal (that whole concept is inane to me), which was supposed to be my life one year(!!!) after cancer. This is my life. I can look at the picture of the younger, healthier me, and wish I was still as young and healthy, and that is it.

Friday, November 25, 2016

Holidays with Ailments

Healthy people have a holiday celebration and they do things like: cook, socialize, eat, socialize, eat more, socialize more, eat more, socialize more. Me? I do things like: cook until my back starts hurting, lie down for a while, cook more, delegate, delegate more, eat, socialize briefly, lie down for a while, eat more, socialize more, fight off sleep while lying down, eat more, socialize more, lie down more, send off guests, sleep, wake up, socialize, go back to bed until morning.

Yes, I had to take breaks to lie down during the day yesterday. I had to take more pain meds than usual. I almost fell asleep while we had a houseful of guests. I did fall asleep while my siblings were driving home relatives and my niece, nephews, and husband were watching a movie. I got up and socialized more. Then I finally went back to bed and slept for nearly 10 hours. 

Today my back hurts at the place my doctor (who will probably be replaced soon) doesn't think is painful. Why am I not surprised? I was happy to host Thanksgiving dinner but with ailments its not as easy. I can't stand up long enough to cook for so many. I need to take breaks and rest. This also means that I have less time to socialize with family members. 

I guess what this really means is that my life has changed and I don't get to do everything I want any more (I am glad I 'finally' figured that out..... Call me slow.)

But it was enjoyable. I just need to learn to remember to plan my abilities better.

Wednesday, November 23, 2016

I Was Too Busy To Blog

Its the truth. I was too busy to blog. Tomorrow we are hosting Thanksgiving dinner for the first time. My mother, after 45 years of hosting Thanksgiving, has decided that she wants to go to someone else's house for dinner. Now I do admit to doing a fair amount of the cooking for the past 30 years or so, but its the first time at our house. In our new house with its big living room and open to the kitchen dining room which is why we now can host. In our new house with all my health ailments.

That's okay, my husband helped a lot and I can always take a nap if I get tired. Since I have cooked, I do not do dishes.

So anyway, today I have:
  • brined the turkey
  • chopped celery and onions for two kinds of stuffing
  • chopped vegetables for veggies and dip
  • made a pecan pie
  • chopped the Brussels sprouts
  • Set up beds for four guests after finding the sheets, pillows and blankets
  • Went to Michaels (for a frame for the picture that should have gone on the wall weeks ago), the grocery store (for butter - you can't make Thanksgiving dinner with two sticks of butter, bagels and cream cheese), and the drugstore for my two prescriptions that I needed. 
I still have to:
  • Make the dip for veggies and dip
  • Wash and trim the green beans
  • Set up our pill boxes for the next week
  • Order take out for dinner
  • Make a second dinner for our house guests that will show up around 9pm.
So all that being said, I am exhausted (but don't tell my brother or husband or they will start telling me what to do all the time). I need to take care of our pill boxes and go to bed early. And sleep late.

With my health ailments (and even before then), I do not do well with not enough sleep. I need sleep, I need sleep, I need sleep. Last night I was so tired I fell asleep before taking my giant pile of nighttime pills. I did wake up in the middle of the night and took the important ones which won't mess up with my morning pills (some need to be spaced out). 

But I digress. I do not want my health ailments to interfere with my enjoyment of Thanksgiving. I want to be able to enjoy spending time with everyone. After I sleep and take all my pills. And delegate more cooking stuff.

Tuesday, November 22, 2016

Its A Miracle

I have been running around like a crazy person for the last few days, and will continue to over do things all through the long holiday weekend with three days of four house guests, hosting the big dinner, and then two craft shows over the weekend.

Although I was completely exhausted by yesterday afternoon, I noticed a lack of noticeable amounts of pain. I was so tired I couldn't stay awake after dinner - in bed before 8 (and feeling no shame about it). I went to bed, did wake up for an hour or so, but feel rested this morning. I hope to take a significant nap this afternoon as well.

But pain? I have been doing pretty well. I had a doctor appointment yesterday where they asked me my pain levels and I thought about it and said maybe a 2 or 3. That is not bad for me. What was hurting? Back, right shoulder, left hip, and right elbow. But my back was being okay. I have been doing all the good things, such as taking my pills, not carrying things around, etc. But I have been doing a lot.

This is a miracle. Even though I have been exerting myself and doing what many people will tell me is too much (yesterday was one doctor appointment, one PT appointment, gym, Trader Joe's, Bed Bath & Beyond, and Best Buy), I have not been debilitated by significant pain recently. (Knock wood).

My fatigue continues to dominate my life but its nice to be (sort of) pain free. I'll just schedule a daily nap as needed.

Monday, November 21, 2016

Coping and not coping

Finally this morning I have an appointment with my meds therapist. The week I fell and was home with my 'concussion' I was emotionally a mess. I have found I do not do well with staying home for day after day.

My husband works full time and if I don't leave the house, he is the only one I see for a few hours each evening, I feel very isolated. I need to see other people at least every other day.

My socialization is planned. People need people. I think I especially need to see people and socialize. I was concerned about this when we moved out here and I stopped working.

I planned my schedule to go to the gym Monday, Wednesday, and Friday so I could go out and see people. When I go to the gym, I end up chatting with many people. I think most of there go to socialize as well as work out. Tuesdays I am home and often have lunch or socialize with friends. Thursdays I go to my knitting group.

This isn't the first time I have felt all alone and gotten depressed. But it was the worst. I think because I was home for basically a week by myself. I felt awful, was tired and had to sleep. I was not able to go places and get out of the house with out total exhaustion creeping in.

I was upset and I tried to see if I could get into see my meds therapist sooner than February. But no. Her next appointment was April. I tried to send her a message directly but didn't hear back. So I decided to call her secretary to ask for a prescription or something. It turns out she had a few cancellations and she could fit me in today.

I want to talk to her about how to avoid depression and isolation when I can't get out of the house.  I am sure with my house this is not an infrequent event. I need plans to avoid the stress and depression.

To clarify I am not a massively depressed person. But with every medical set back I seem to lose my ability to cope more and more. If I was a healthy person and able to do everything I enjoy, like hiking into the woods or skiing or..., I might be less depressed.