Tuesday, September 27, 2016

When To Get a Flu Shot?

This is part of the big conspiracy to confuse patients. When am I supposed to get a flu shot? In previous years I would go to my primary care physician and get a flu shot. I saw her a couple of weeks ago and was told it was too early. I should wait until the hospital has its clinic in October or go to an other flu shot clinic I find. Hmmmm...

So I did some research. The latest wisdom is to get a flu shot between Halloween and Thanksgiving. But there is other evidence that it may be different for over 65 or the medically frail. Am I medically frail?

I don't know. I do know I am confused.

Monday, September 26, 2016

The Political Season

We are far into the political season. I am just happy it will end in six or seven weeks. I don't know how soon it is and I don't really care. I just know the following:

  • When voting for a candidate you are not voting for the best, you are voting for the least worst. This is especially true this year. No one is running around saying which candidate is better. They are only saying which candidate would be the least bad.
  • We all have the opportunity to weigh in on election day by voting. I am not interested in discussing anything political and especially will not have any conversation with someone who doesn't vote.
That's it. You have time to educate yourself on the process and the issues now with enough weeks left to learn about them. So go forth and educate yourself and then make your choices (silently) and you have done your part.

I am so frustrated with the entire process this year, I am not interested in discussing it. I am not happy with how the campaigns have progressed so far that I just am going to ignore the whole thing and vote on election day.

I had thought I would watch the debate tonight and then thought not and then wasn't sure. Its supposed to be HHHUUUUGGGGEEE! But then the decision was taken away from me when I was scheduled for an MRI tonight at 930 PM. I will not be able to watch it. I need to leave here at 9 PM and then will be done around 1045 PM.  I still may DVR it so I can watch it another time. Decision made

I was thinking it was unusual that I could get an MRI on such short notice but I think I figured it out.

Politics over for me. Just go vote.

Sunday, September 25, 2016

Why Can't I Sleep?

So I am always in pursuit of the land of nod. The only way I seem to be able to sleep is to take a sleeping pill but that doesn't guarantee a full night's sleep. If I get so exhausted I can't watch tv I usually get a couple of hours of sleep. Sometimes I can even sleep all night. But I'll tell you my secret for sanity in the middle of the night. I pull out my tablet and play computer games until I can fall back to sleep.

I am always looking for help with sleep. WebMD can always provide assistance with all things medical. They sent me an email the other day on the Causes of Fatigue and Seepiness and How to Fight Them. It wasn't that helpful. It included things like hidden UTIs, dehydration, heart disease and apnea. None of those are me. And the one that is me didnt help.

"Fatigue Cause No. 14: CFS and Fibromyalgia
If your fatigue lasts more than six months and is so severe that you can't manage your daily activities, chronic fatigue syndrome or fibromyalgia are a possibility. Both can have various symptoms, but persistent, unexplained exhaustion is a main one.
Fix: While there's no quick fix for CFS or fibromyalgia, patients often benefit from changing their daily schedule, learning better sleep habits, and starting a gentle exercise program."

I have done all that. We even got a new power bed with a good mattress where I can raise and lower the head and the feet. I do exercise. I do everything else. I am just very complicated.

I might need to start counting sheep or something.

Saturday, September 24, 2016

Not A Good Week Ahead

This coming week is going to be long, stressful, and sleep deprived. I don't know what I was thinking but I think the real answer is I wasn't thinking. This is my week:
  • Saturday (today) - craft show where I will have a table all day
  • Sunday: Lunch and dinner reservations with two different groups of people. Lunch at noon and an early dinner at 4 PM. 
  • Monday: 930 PM MRI for my neck. I should be home by 11. I never stay up that late.
  • Tuesday: Deep cleaning at the periodontist with novacaine. How fun! 
  • Wednesday: The only good day because there is nothing on my calendar
  • Thursday: Lunch plans with a friend. Sleep lab overnight to see if there is anything else wrong with me. This means another night of not enough sleep.
  • Friday: Leave the sleep lab at 630 am and go directly to the gym.
What was I thinking? I don't know. I need to allow enough time for plenty of sleep each week. Monday morning I hope to sleep late. I also hope I can sleep in on Wednesday and Thursday since I will be up too late and do not expect enough sleep at the sleep lab.

My goals then for the week: focus on getting enough sleep and rest and pretend nothing will hurt. This is just a lot of poor planning on my part.

Friday, September 23, 2016

How Long Do I Have?

When we are first diagnosed with cancer, one of the first questions we ask is 'how long do I have?' We assume/hope/pretend we will beat our cancer and live a long life. But for me, the little voice inside has always asked 'will I live a long time after the beating my body has taken, mostly due to cancer treatment?'

With two cancer diagnoses behind me, I have wondered how long I will live. My family mostly lives into their 80s, my parents are currently 86 and 88, my maternal grandmother lived to 96. I have always thought I will make it a while longer, being very indeterminate. I don't think I am dying anytime soon.

My body is not what we call 'in good shape'. I have aches and pains all the time, as well as arching pains across my back, twinging hips, throbbing knees. All of this wears on my body. It has gotten me concerned.

I am currently 35 years from a thyroid cancer diagnosis and 9 years from a breast cancer diagnosis. But today I read about a woman who is 50 years from her breast cancer diagnosis. She was diagnosed at age 29 in 1966. Now she is 79 and still here.

That is very encouraging. I really hope to make it 50 years after both cancer diagnoses. I have 15 and 41 years go to. I am not sure if that 41 years is doable for me but I wouldn't mind.

So I hope you are also encouraged by this as I am. With a breast cancer diagnosis, we deal with surgery, radiation, chemotherapy, and more. Our bodies are stressed and strained. But now we have a hero to look up to. If she can do it, so can we.

Thursday, September 22, 2016

More Needles????

I hate needles. I really hate needles. If a needle is near me I can't look. If a needle is near anyone else, I leave the room. (Actually sewing needles and knitting needles are fine. Its those icky medical ones that cause me problems.)

Now it looks like more needles are in my future. Ick. Double ick!

Yesterday I went to see neurosurgery because of increasing pain in my neck. Real pain in my neck, not the literal kind. I do have to deal with the literal pains in the neck (like insurance companies, hospital billing departments, and poor bedside manners). Back in 2014, I was having problems with my right arm. I was sent to see a neurologist to see if there was something going on back in my brain to cause this. (A subtle way to see if there was a 'thingy' in my brain.)  There wasn't anything in my brain (except my brain) but there were disc protrusions and bone spurs on my neck.

Jump ahead 2.5 years later and I have increasing pain in my neck, shoulder, and arm. My primary care referred me back to neurosurgery. The neurosurgery physician's assistant said the following:

  • Your body may reabsorb disc tissue but will not reabsorb bone so its not going away anytime soon, probably not ever.
  • Physical therapy may help so we are going to try that.
  • They want a new MRI of my neck (and brain) to get another picture of what's going on and see if there are any changes (read that as growth).
  • The next step is needles in my neck sort of like what I get in my spine.
I am overjoyed. I can't wait. But I guess I have to realize that I can force myself to deal with needles if it means the pain might go away lessen. That is my dream actually for a pain free, healthy body. So I guess I have to stick with needles (that is such a bad pun I have to leave it even though its not what I meant to say. What I meant is I have to cope with needles.).

Wednesday, September 21, 2016

Lymphedema and the lymph system

So as an extra gift with breast cancer, I have lymphedema in my left arm. I am very coordinated and fell on our icy front walk and landed on my hand. My arm swelled up and voila, I have lymphedema. I have a 'lovely', 'skin tone' sleeve that I get to wear sometimes. It even provides some sun protection so I get a tan line on my wrist.

So what is the lymph system? I had no idea until I fell that day. I sometimes try to find more information on the lymph system.

First of all what is lymph? That clear fluid that seeps out of blisters and cuts sometimes. Its the other system in your body like your blood system but it has white blood cells and cleans out the dirty cells.

The smart people at Dana Farber provided this nice picture and a more detailed description on their blog here.

So if you look at the picture in detail, you will see how it flows around your body. And its pretty much divided in four quadrants of the body: top right, top left, bottom right, bottom left. Lymph nodes are lymphatic coolers. But if some get taken out, a 'traffic jam' occurs and all that lymph fluid gets backed up in whatever part of your body is beyond the incisions.

In my case, they took a big scoop under my left arm that grabbed a whole bunch of nodes. So the little lymphs get stuck in my arm which swells and is permanently larger than my right, dominant hand.

A former co-worker of mine had a bad leg from something traumatic and walked with a lymph. He ended up in the hospital for six months with lymphedema in his leg. I have a friend who had lymphedema in her arm and also on her side and in her abdomen. With treatment, she is now a smaller size in her torso.

So this is a nice little education class for the day. Class dismissed.

Tuesday, September 20, 2016

In Shock

We moved to our new neighborhood last January. January in New England is not a time when people are outside much (unless they are playing in the snow somewhere). People are not outside in their yards and being social. All socializing is inside.

We met one family of neighbors a few weeks afterwards because we were outside dealing with snow and ice. We then met more neighbors as the weather got warmer. Because of the street's turns, we have one neighbor directly across the street and one next door. Everyone else is around a corner someplace. I met the neighbor across the street, B, in April or so. We talked gardening. She works at a local school and was very nice. I met her son and grandson. She was planning on working a few more years and then retiring to enjoy her gardens.

We discussed gardening issues over the spring and early summer. She was looking forward to a trip to her home country with some family members in the summer. Then we went away for a few weeks and she was away for a few weeks. I hadn't talked to her since July or so. I just figured she was busy and I was busy.

Last week I noticed lots of cars visiting her. Her family would come over from time to time, mostly on weekends. But there were never that many cars for that many days. It was very out of place. Friday it looked like a big garden party was going on. One of the other neighbors told me that the mailman, delivering a package, told her that there was lots of crying and hugging going on.

Saturday we went to the beach for the day. Sunday one of my other neighbors asked if I knew what was going on because on Saturday she saw a hearse and a procession leaving the house. (She couldn't stop because her child had a medical emergency she was dealing with.) No one knew what was going on.

I thought about stopping by on Sunday to make sure all was okay. All the neighbors were concerned. No one knew anything. I was asked by several people.

Yesterday after the gym, I saw people sitting in the garden. I went over to ask. It turned out that was two of her children. B had felt sick on Tuesday and went to the hospital. She died Wednesday morning in the hospital. She was gone. Everyone is stunned.

It turns out B developed a horribly aggressive, very rare form of lymphoma and that was it. Nothing could be done. Its just horrible. I can picture her in my mind but I will never see her again.

Monday, September 19, 2016

I took a day off

I took a day off from basically everything. Everyone is entitled to a break once in a while. Saturday we went to the beach for a few hours and out for clams. Yesterday I was lazy and did not accomplish much.

I actually pretended I was healthy but wasn't dumb enough to try to do anything I shouldn't. Yes I took it easy. I played with my loom - I have been weaving more. I got some awesome yarn last week that I had to try weaving.

Actually I needed a break from the 'sick' me. Friday night I remembered to check my cell phone for voice mails. Unfortunately I didn't get them to call back two doctor office's before the weekend. I wasn't going to worry about it all weekend so I took a few days off. I will call this morning and work it out and find out what's going on.

Back to reality on a rainy Monday morning. Maybe the drought will finally be over.

Saturday, September 17, 2016

I Am Entitled To Change My Mind

Most days I blog about what is on my mind and it just sort of  pours out of me. Sometimes its in reaction to something I saw, read, or heard. Sometimes its just what is on my mind. And sometimes I change my mind. Sometimes I read my blog again and think about what I actually wrote.

Yesterday, I blogged about changes I could make and a week ago I blogged about how I am done making lifestyle changes. And I realized I totally changed my mind. But then I realized I didn't. I am ready to make changes that other people tell me to do. And I am ready to make changes that I want to do. I don't want to be told what to do. I am an adult after all. (I realize some people may disagree with this - about being an adult that is.)

I like to make my own decisions about me. And I am kind of sick of doctors telling me what I am supposed to do and needing to know every detail about me. The worse your health is the less privacy and modesty you have. Doctors make all kinds of decisions for you - eat this, not that, let me stick this needle into you, you will only feel a pinch, etc.

So I am done with being told what to do, or have it suggested to me.... I am going to make my own decisions.

Friday, September 16, 2016

Changes I Can Make

My therapist asked me an interesting question the other day - do I eat specific items that could help with my fibromyalgia? I actually thought about it for a minute. (Me, taking other people's advice???? LOL) An email came through my inbox on foods that are beneficial for people with fibromyalgia - I got as far as seeing bananas on the list and I eat one every day.

However that did prompt me to wonder what other changes I could make to my life to help me in some ways. I had thought that once I left my pastry filled job I would lose a few pounds. I did lose a couple pounds but then they reappeared. This indicates to me that I need to rethink my eating habits because the flab is not going to vaporize as I expected.

I am going to think about making some changes to help me feel better - losing weight will help with other health issues. Here's my list of what I want to work on:

- Food and eating habits. Incorporate more 'good' foods and less 'bad' foods. Good foods are ones which may help with fibro and RA as well as lose weight. Lots of whole grains, fresh fruits and veggies and better home made stuff. The problem with me cooking more is I don't have the energy or the stamina to do much more cooking. I'll have to work on this area and figure things out.

- Exercise. I do go to the gym and get an hour of cardio in three times a week. I also then spend another 30 minutes or so doing stretching, free weights, and machines. But I can't go for walks and things like that. Different body parts start hurting once I go too far. I do try to go out and garden and get out in the yard but I want to figure out how can I do more without regretting it. Maybe I should sit down with my physical therapist and get some professional advice.

We already are leaning to the organic, whole food sort of thing so that area is under control. I grew a lot in the garden this year until the drought hit so we didn't get as much food as I thought but this will expand next year. I am not sure what else can I do but I will give it more thought.

I do think I want to explore more changes that I can make to work on this. I think a goal is a good thing and will provide motivation for me.

Thursday, September 15, 2016

Pie in the sky!

The lovely smart people at Komen have announced their new goal: To reduce breast cancer death's by 50% in the next decade. Um, this makes me think of the Deadby2020 people. 

Its so logical to to just come up with a great, yet unattainable, goal that makes an awesome headline so you get great publicity to get more donations for this unrealistic idea. 

Its all about the headlines. This is how the PR machines crank out buzz. Seriously. I used to work in marketing and PR and this is what they do. Now the organizations may think they are reasonable goals but if you think about them, they aren't. 

Can an organization decide that they are going to obliterate a disease over a ten year period that has been researched to death (no pun intended) for a very long time? Does that sound logical? No. Or how about another organization decides that they are going to cut the death rate in half from a disease that has been increasing mortality? If something is still rising, how can they just cut it in half? Again, not logical. Or feasible.

I am sure the people at the both Komen and NBC 2020 think they have come up with good ideas. But honestly I am not sure how realistic they are. And if I recall correctly didn't the urge to end breast cancer by 2020 start before 2010 and now they have just over 3 years to go and I haven't seen much progress. Yes I know there have been incremental advances but no solution yet.

These are basically your pie in the sky PR dreams to raise money.

Wednesday, September 14, 2016

Sleep, Glorious Sleep

So in recent months I have developed the ability to take two hour naps and then get a full night's sleep. I just thought it was just because I need more sleep because some nights I get lots of quality insomnia. But no. My doctor doesn't agree.

No, no, no, no.She is concerned that I get so tired that there might be something going on when I sleep (like snoring) and that my blood oxygen (not blood alcohol - which I often say instead of oxygen for some reason) level has been running lower and lower over the years. So I get to have a sleep test again.

I just had one two years ago. I don't sleep well during a sleep test. I hate the idea of being watched and monitored while I sleep. I sleep best when in a bed with my husband and my two cats. (Maybe I can bring them with me?)

Anyway, grr, grr, grr. But if it makes me end up healthier (but not with a CPAP machine) I will be happy. The idea of a CPAP machine drives me crazy. I am not sure I could sleep with one.

Tuesday, September 13, 2016

That Breast Cancer Bond Thingy

While I was at the gym yesterday, I was on the bike getting my cardio in when I two women who I know started talking next to me. Then one of them came over to said hi. I knew she had a lot of cardiac issues last spring and I asked her how she was doing. She said she is better now but still had some soreness on the side of her rib cage. That didn't seem like a cardio issue so I asked her what it was.

She had a mastectomy because she had her third occurrence of breast cancer. Twice on the left and this third time on the right. And all three were different cancers. I thought wow three different breast cancers and now two separate mastectomies. And over twenty years.

Of course we became instant pals because I told her about my breast cancer history. That breast cancer bond showed up.

I still find it funny when that breast cancer bond shows up. I have no other ailment that inspires such close bonds. ACL injuries? Nope. Fibromyalgia? Nope. Thyroid cancer? Nope. Rheumatoid arthritis? Nope. Breast cancer? Yep! Big time.

I think its a spin-off of all the unity behind pinkification. You get breast cancer and someone wants to stick a pink ribbon on you so you can become best pals.

Monday, September 12, 2016

How can I sit?

My newest advice is don't sit with your legs crossed. The reason for this with my bad knees is that the amount of torque that is put on your tibia when you do that is very high. My right knee (the one with the partially torn ACL) popped and I couldn't move or straighten my leg. It took about 15 minutes before it started to feel better.

I asked the physical therapist at the gym. He was the one who told me I shouldn't sit with my legs crossed.

So if I sit down on the floor, how am I supposed to sit? I can't sit with my legs out straight. I can't bend them to one side because my back would complain. Don't even think about kneeling. That is not possible. I can't stop sitting on the floor either. Sometimes you just need to sit down an take care of something.

All I can say is crap!