Saturday, April 25, 2015

Dealing with stress, or not

So I have had a tiny bit of stress in my life recently. And I have been trying to do too much and ended up exhausted. There is a difference between fatigue and exhaustion and being tired. When I hit the wall, I have all three.

Everyone goes through stressful periods in my life. When I am stressed, I become an emotional eater and eat everything in sight. Then when faced with a boat load of stress, I stop eating because I am too stressed. That would be nice, I am too fat, but I really don't need any more stress at this point.

I am going to spend the next seven days avoiding stress. I will get some rest and not stress. I am at the point where I am running out of the oomph I need to keep going. My phone is on quiet time, where I won't get beeps at every CNN headline or FB  notifications or Twitter.

I think if I went to a doctor appointment at this point I might get a reprimand of some kind for being too stressed and doing bad things to my blood pressure and all that. I have a doctor appointment a week from Monday so I have one week to whip myself into shape.

Crap. I'm doomed.

Friday, April 24, 2015

One hell of a day

I finally got some sleep last night and felt better. Until I decided to be normal.

I got up and puttered around. Then I realized I could sit on my a$$ for a couple of hours before meeting a friend at 11. So I raced through the gym and had a fairly good workout for once. I left the gym and met my friend - actually my old boss form the late 1980s. We had lunch and left the diner. Then my day went downhill.

I realized halfway to my car that I didn't have my phone. My wonderful smart phone that has my whole life on it was missing.  I know I had my phone at lunch because I had to charge it in the restaurant, because the battery was at 4%, at the outlet under our table.

But I didn't have it. I went back to the restaurant and it wasn't there. We looked. The waitress, who I know from all the years we have been going there, helped me look. She even got the cook to get down on his hands and knees and look under the radiator. We gave up.

I left and thought maybe my friend picked up my phone by mistake, but I really didn't think she did. I returned my books at the library and drove home, when a little thought occurred to me. I can find my phone online. I logged in and it said the phone was still at the diner.

I called them and said I would come back with a flashlight so we could look under the radiators. We still couldn't find it. An older woman asked if we could find her bottle of pills that she had dropped at home.  We still couldn't find it.

I went back home and looked online again and it showed that it was still at the diner. I knew it wasn't in the diner. But I thought maybe I dropped it outside instead and there was this big van parked nearby - maybe it was underneath.

So I went back again (its only 1/4 mile from home) and parked across the street. I looked in the gutter, I tried to look under cars. Then I got the idea that maybe someone turned it into to a nearby store. Presto, it was in the third store I went to. It was very stressful.

Then I finally ran some errands and came home to relax. I do not need any more stress at all. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. Some day.

Thursday, April 23, 2015

Running ragged and then some

I've been running myself ragged and am not recharging. This week I have had several long days. Well not just that week, last week as well. Long emotionally and physically draining days. Repeated again and again. These are the days where I come home and am too tired to walk up the stairs. I haven't had the time to rest that I need but I am still moving, somewhat.

And then to top everything off, yesterday I came home physically and emotionally drained. I got out of the car and hear that really bad noise, 'ssssssssssssssssssssssss', as the air drained out of my rear tire. There is a piece of metal sticking out of it. I called AAA and the tire store. I got the spare put on the car. Instead of resting for an hour this morning, I get to rush out the door early and got see if I can get the tire repaired before going to work.

Did I sleep last night? Not really. Even though I took a pill, it took a long time to fall asleep and then I was up at 12 and at 3. Grrr....

I need a day off to rest. Not sure I can fit it in tomorrow but I will get some rest. Soon. Or I might fall asleep in public. Triple grr.

Wednesday, April 22, 2015

Lessons in dying

I started this post shortly after Elizabeth Edward's passing in December 2010. I keep going back to this post periodically and added and deleting thoughts. Each time I am usually prompted by another friend's advancing health issues.

Elizabeth Edward's death provided us new lessons in death, cancer, dignity and cancer treatment. She was educating to the end when she announced that her treatment would no longer be productive. She joins a list of famous women who have helped make cancer more understandable and less fearsome.

Real people get cancer as do famous people. But often we don't understand what they are going through unless we have been there ourselves. But even then, its can be difficult to understand as the treatments vary as do reactions to them. Some people tolerate them better than others. Not all lose their hair. Some find they react to the treatments in bad ways. I have friends who could not complete treatment because they were allergic to chemotherapy drugs or could not tolerate them for other reasons.

I have numerous friends who have succumbed to cancer since I started writing this post. Last weekend I got together with a breast cancer friend and she said that all her friends with cancer were gone, including the too young ones. There are feelings of guilt when our friends are gone. Why them when, before cancer, they had so much life left for them?

But as each of friends go, we learn from how they lived their life and die. We may not agree with them - why didn't you get your affairs in order earlier? We may admire them for what they accomplished. But we always still miss them.

Tuesday, April 21, 2015

Blood test for cancer?

[Did you take the survey yet on who reads blogs? There's still time. I'm sure you meant to go back and complete it later so here is a gentle reminder. You only have 9 more days. Go take the damn survey!]

So I am pleasantly surprised to learn about this new blood test that can detect cancer without a biopsy. They call it a liquid biopsy. Basically it means that they hope that cancer can be detected before its noticeable. This is not the same as the blood biopsy I blogged about the other day for breast cancer. This is something else that is new.

It has been tested on patients with lymphoma and one woman with lung cancer.

"The hope is that a blood draw — far less onerous than a traditional biopsy or a CT scan — will enable oncologists to quickly figure out whether a treatment is working and, if it is, to continue monitoring in case the cancer develops resistance. Failing treatments could be ended quickly, sparing patients side effects and allowing doctors to try alternatives."

This means that patients wont have to wait for months to see if their cancer treatment is working. They can be monitored through blood tests. And recurrences of lymphoma were detected three months before they were noticeable.

Of course more research is needed but things look good. Personally, while I am not a fan of too much blood work, I much prefer them to other tests or biopsies.

Monday, April 20, 2015

Challenging doctors

I think I challenge my doctors. I think they they I am going to fall apart on them or something and I am not that easy to treat. First of all, I am allergic to all the good drugs - penicillins, Benadryl and prednisone, plaquenil (treats RA), codeine, and a couple other things. I even had one doctor say to me that I must be really fun to treat.

If I have an allergic reaction, the standard course of treatment is Benadryl and steroids. Not me. They have to find another combination. And if I have an RA flare, the common treatment is steroids, usually prednisone. Not me again.

And if I need antibiotics, I am allergic to penicillin and related drugs and other antibiotics interact with some of my other medications. Its not uncommon for a doctor to question me on the reaction I have had to a medication. Or to ask me to alter some of my other medications while on antibiotics. I have sometimes even gotten a phone call from the pharmacy telling me they can't fill my new prescription because of interactions and they need to go back to the doctor for a new one.

Also, the list of medication allergies has ramped up significantly in the last few years. I am nervous about trying new medications because I seem to develop new allergies frequently. Who knew that the anti-inflammatory gel for my arthritic hands and feet would make my heart race?

Finally, without a thyroid, I can't take most medications that have warnings about thyroid disease. Between that and being allergic to Benadryl (which translates to some kinds of antihistamines), treating the common cold is a royal PITA.

The way I see it, they went to school for a really long time and I get to make them think a lot about how they can treat me. I can be a challenge to them so they can't just give me the basics and move on.

Sunday, April 19, 2015

Its been sad

The last picture before we went to the vet.
On Thursday, we had to put our cat, Shere Khan, to sleep. He was my chemo buddy. I would sit on the couch and watch bad TV and he would snuggle. He was with me through lots of health issues in the last ten years. And he snuggled and cuddled through all of it.

My husband got him in the fall of 2001 shortly after he bought a condo. He went to a dinner party and mentioned that he was thinking about getting a cat. Presto, he went home with a cat. Shortly after, I met them both, three years later we got married and moved into a house together. Then my health started to fall apart and both of them stuck with me. I think he knew when I wasn't doing well and he supported me through it.

He was born in November 1994 which means he was over 20 when he died, old for a cat. We knew he was having health issues in the past few years and his health really went down hill in the past few months. It finally got to a point where he wasn't eating or drinking. When we brought him to the vet on Thursday, she told us he was starting to suffer from being dehydrated and it was time.

It has been incredibly difficult for me. More than I ever thought. As someone at the vet told us when we left in tears, time will heal. I have been a little depressed and been isolating myself as I mourn. I think I am turning the corner and will begin to feel better soon.

We will go on vacation in a soon and I hope that helps me recover more. I just need to be sad for a while.

Saturday, April 18, 2015

Breast Cancer Blood Test

A new blood test has been developed which tells which women will develop breast cancer in the next 2-5 years with an 80% accuracy rate. The point is that mammograms show when breast cancer has already occurred so this would be a way of telling before it happened.  And to quote:

"...the method could create a paradigm shift in early diagnosis of breast cancer as well as other diseases."

That's all great and stuff but I have some questions.
  • If you are told you will develop breast cancer in the next two to five years, what do you do? Get a mammogram every month until it shows up? Or start chemo ahead of time? I'm not sure.
  • What about the 20% inaccuracy? It won't work for one in five women so there is no benefit
  • And all of us who were told we were too young or had no family history or risk factors? And then got breast cancer anyway?
So this is progress but I have concerns. I would like to see the blood test refined and have it be more accurate. That's easy for me to say. I guess I think this is a step in the right direction but will only help 80% of people. And I feel that all of us who were exceptions will still be exceptions.

Friday, April 17, 2015

Dr Who?

Actually Dr Oz. What a name. he always makes me think of that other movie, mostly the man behind the curtain. I know Oprah made him famous but I was never very impressed with him. He's too skinny and there's something about his smile that makes me think about a snake-oil salesman.

But anyway, his colleagues at Columbia want to get rid of him - because  he is:

"a fake and a charlatan." Dr. Henry Miller of Stanford University went on to say that Columbia University must be "star-struck and like having on their faculty the best-known doctor in the country."

And if you read about the scientific validity of what he does:

"Popular Science and The New Yorker have expressed criticism of Oz for giving "non-scientific" advice. These criticisms include questioning if he is "doing more harm than good".
The James Randi Educational Foundation has awarded Oz with their Pigasus Award, an award intended "to expose parapsychological, paranormal or psychic frauds that Randi has noted over the previous year." The award consists of a silver flying pig and refers to claiming something so doubtful that it will only happen "when pigs fly". Oz has been given this award on three separate occasions, more than any other recipient..."

The third time he received it for refusal to face reality for his continued promotion of "quack medical practices, paranormal belief, and pseudoscience".

My favorite part is that:

"Oz has countered that he is a proponent of alternative medicine and has stated that he makes great efforts to inform viewers that he neither sells nor endorses any supplements. He also created the organization "OzWatch" as a way for viewers to report scams. Ozwatch has received more than 35,000 complaints and has issued 600 cease and desist letters."

Really, 600 cease and desist letters? And:

A study published in the British Medical Journal on the effectiveness of Oz's medical advice found that 51 percent of his recommendations had no scientific backing and rationale, or in some cases contradicted scientific evidence.
And didn't he learn from the 2014 Senate hearings on some other quackery? So why is he on TV and teaching medicine?

Thursday, April 16, 2015

More fibro fun

Fibromyalgia is my favorite 'fun' ailment. What makes it so fun? Its the combination of pain, insomnia, and fatigue. If you are tired, sleep is always the cure. But insomnia to go with it? And the pain. Its so much 'fun'!Take a look at how much fun it really is.

And if you can figure out a way to sleep with insomnia, please let me know. Or to get my brain to function again with its fibro fog?

Wednesday, April 15, 2015

Bathing Suit Shopping - or things cancer people should be exempt from

Yesterday after work, I went bathing suit shopping. What a bad idea. Why do I do this to myself? Cancer people should get awesome bathing suits without having to try them on and have their size fit them, not the one two sizes larger. They should also get exempt from lots of bad things in life - standing in line to start with.

Why are bathing suits sized so small? Who ever finds a bathing suit in their regular size that fits? Every one I know always gets a bathing suit a size or two larger than their normal size. I know you want them to fit you and not fall off when getting out of the water. But seriously? They never fit.

Anyway, I did go bathing suit shopping. Did I buy a bathing suit? No. I found one I really like but will have to go to another store to find it in my the larger size. They are called 'Magic suits' and are supposed to make you look like you lost ten pounds instantly.

What I did buy was a gift for a friend, a pair of shorts, three tops, a sweater, a replacement power cord for my phone and a wireless keyboard for my tablet. But no bathing suit. This means I have to go bathing suit shopping again. Damn.

Tuesday, April 14, 2015

Money worries during cancer and other illnesses

First there is the whammy of you have cancer, followed by many more whammies including hair loss, surgeries, chemotherapy, and then finally money. You cut back on work during treatment and the bills get bigger. And cancer bills aren't little. A chemo infusion or surgery might hit 5 digits for each one. Your insurance covers some of it but there is always your portion. And the bills keep coming.

Barbara, over at Let Life Happen blogged about an interesting option on how to fix cancer costs by charging by patient instead of by each treatment. Cure Magazine recently ran an article on medical bankruptcy fears during cancer. (And if you have cancer and don't read Cure Magazine, you are missing out big time.)

Cancer is stressful enough without having to worry about money as well. I personally think that if you get cancer, you deserve a financial fairy godmother to swoop in and take care of you during treatment. You shouldn't have to worry about bills, cleaning your house, doing laundry, taking the car to the garage, or standing in line anywhere. That would be nice - but really not likely.

So if we aren't going to get financial fairy godmothers, I think we need to start focusing on changing the medical system to help reduce the financial worries when diagnosed with any major illness. Doesn't it seem illogical that the sickest people get the biggest bills? They are most likely not to be able to work full time and earn the big bucks. They get all the expenses and are least able to pay.

I have a friend with MS who used to have a great career. Now she writes articles for a local paper and lives on social security. I used to work full time and now I struggle with 15 hours a week with RA and fibromyalgia. And I get giant medical bills. This year so far, I have already hit $2500 in copays. And its only April.

Let's fix the system and stop causing medical bankruptcies.

Monday, April 13, 2015

Spring has sprung

In the land of eternal winter, also know as metropolitan Boston where we got at least 9 feet of snow in six weeks, it looks like spring has finally sprung. I spent the weekend wearing shorts, t-shirt and sandals. I didn't get a sun burn but it was nice to be outside enjoying the sunshine. But winter is not completely gone, we still have  snow drifts. Yes they are getting smaller and fewer but they are still found wherever large piles of snow were dumped in a shady area.

Today is opening day at Fenway Park and the Boston Marathon is a week away. Snow drifts have never been an issue at either event, until this year. The snow is gone from Fenway but I am not so sure about the length of the marathon route.

This was our house March 26, 2015.
You can see we still had glaciers. The last glacier in the backyard finally melted last week. But there are now signs below of spring. Crocus and miniature hyacinths.
 And a single little iris hiding behind the lavender.
Then yesterday I got some pansies to add for some more color but have to wait a bit to plant them.

Sunday, April 12, 2015

Catching up on sleep and rest

Today my goal is to catch up on sleep and rest. Friday I got stupid and got up early to go to the gym so I get my nails done after and not have to worry about messing up my nails by going to the gym later.

Yesterday our cat, who has been losing way too much weight, started waking me up about 330am because he was hungry. I actually got up at 545am and made him cat food (pureed canned salmon in the food processor) and fed him. (He's 20 years old and blind, deaf and can't smell) Then I gardened, did a bunch of other stuff, met my family for dinner, and stayed up until midnight. What was I thinking? It felt like a good idea at the time. My husband let me sleep late, which was only 8am and he got up and fed the cat.

Its 11am and I am still in bed. I got up and got the paper, coffee and ate some bacon my husband cooked. I am contemplating taking a shower in the near future but it may take me another couple of hours. Tonight I will go to bed early and not stay up until midnight.

My life is a fibromyalgia commercial.
Which consists of body pain, fatigue and insomnia. Combine all those and you can figure out why I need my sleep and rest. Staying up late and getting up to early are not good for me.  And catching up on sleep and rest takes a few days. But I have to go to work tomorrow morning. Damn.

Saturday, April 11, 2015

Things that annoy me

I am sure you all can think of things that annoy you. We all have our pet peeves. But since its my blog, I get to tell you mine. You can feel free to leave a comment about yours if you want too.

I always get annoyed by people making assumptions. You know they assume you are going to die because you have cancer. Cancer is not fun but its not necessarily going to kill you. You could get hit by a bus anytime. Think of it that way for a bit. But I really hate it when people make assumptions about others relating to health. You have no idea what I am going through so stop assuming anything about me. You can ask me about it but don't assume I want to tell you my entire medical history. I will tell you what I feel like discussing but I am not going to have an in depth discussion about my health.

Then there are the idiotic thoughts about my health by, well, idiots. Those are the people that either:
  1. Ignore the fact I have health issues and can't do what I used to do. Do you want to go hiking? We are going peak bagging this weekend. You should come with us.
  2. Assume I will be cured. (See assumptions above.) I am not going to be cured. The best hope is no further health issues or disease progression. Stop telling me that because I had a back procedure, I must be fine now.
  3. Tell me how I feel. You must not hurt much today since you didn't work yesterday. Um, pain and fatigue don't give me breaks because I took a day off. That day off was to recover from the days before.  (I think I am stuck on assumptions here).
Finally there are the people who insist on telling me what treatments I need. Did you go to medical school? No? Then shut up. I don't really care what your cousin's neighbor's dog walker's mother's hair stylist's friend had for treatment for a completely different disease twenty years ago.

I also get annoyed by things like people who stop their car in the middle of the road for no reason,  people who use their cell phones in restaurants or movie theaters, and at the cat who won't eat enough because he's old and can't smell his food, but you get the point.

See, I'm not perfect. I am just a normal person stuck inside a body that has lots of health crap.

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