Friday, May 22, 2015

Damn those pesky blood tests

Yesterday my plan was to go to my therapist and then get some blood work done for my rheumatologist. The hospital switched to a new software program with a new patient interface. I like the interface because I can see all my upcoming appointments and test results and all sorts of fun stuff.

When I saw my rheumatologist earlier this month we agreed to switch around my meds which meant more blood tests. I had made a note of getting my blood work done yesterday but realized I never got any notification on my planned blood work. I decided I should call to find out if they were really scheduled. And they weren't. But because I called, they were happy to put them in the computer.

So I went for my blood work after my new therapist urged me yet again to go to a different support group on how to relax more. This morning I got the result. And they suck. To be honest.


This means my plan to switch away from methotrexate and the forever and ever colds may not work. Damn those pesky blood tests. Damn.

Thursday, May 21, 2015

I have nothing to blog about today

But I feel compelled to because I blog every day. I have received many questions over the years of blogging (almost 8) on how can I find something to blog about every day. Well today I didn't. Sorry. It happens.

Wednesday, May 20, 2015

What if life didn't revolve around cancer

Maybe you healthy people out there can weigh in here. I look at my email inbox, my Twitter and Facebook feeds, and everything I touch it seems, and they are all full of cancer, fibromyalgia, and rheumatoid arthritis. I feel like I live in a world full of cancer, fibro and RA.
But don't other people live in a world outside of cancer, fibro, and RA? Everyone has different stuff filling their life. My stuff seems to be focused on my health.



All the blue stuff on the right is my health. What if I didn't have all that blue stuff to fill my life? Maybe I could do other things. Travel, adventures, hiking, a full time job, and not go to the doctor? That would be a nice life.


Tuesday, May 19, 2015

Pharmacies decide when you can get your prescriptions

Yesterday I went to the pharmacy to pick up two refills for me and get my husband's prescription filled. No such luck. I got one prescription refilled. The other one is too soon according to the pharmacist. And my husband's was also too soon. As I was actually speaking with the pharmacist who I have spoken with several times in the past (because I am a frequent flyer at the local pharmacy), I decided to ask more questions.

I found out that most national chain pharmacies make their own rules as to when you can pick up a prescription. At Walgreen's, where I was, and at CVS, you can only pick up some prescriptions, of medications subject to abuse, the day before or the day they are needed. Rite Aid, I was told, allow you to pick it up two days prior. You can't pick them up sooner. And if you are going on vacation and want to pick up a prescription early you need to show a plane ticket or something. This isn't a law or anything this is a rule the chains have developed.

Really? How non-customer focused! This is a huge example of poor customer service. From the store's point of view, the customer has to come back to the store for each prescription (unless they can be perfectly timed to be picked up together) and potentially purchase other items.

But from the customer's point of view, with poor health probably, multiple store visits at the company's convenience are not so good. I have options here. I can switch my prescriptions to mail order where they are more lenient on prescription dates as they have to allow for shipping time.

I completely understand the issue of substance abuse, fake prescriptions and all that. But this is a bit too strict in my eyes. I can understand if its a new prescription or a new customer should be made to wait. An existing customer who gets their prescriptions filled regularly should not have to deal with this.

I have always believed that it was the insurance companies and laws that were the basis for determining when you could pick up your prescription. Not stupid company policies. Sorry I am not a fan of these. Maybe its time to write to the corporate offices to complain.

Monday, May 18, 2015

All those "Don'ts"

Normal people (I assume because I haven't been normal in a really long time - at least physically, mentally may be another story) go to the doctor or dentist and get all sorts of advice. Floss, brush, eat healthy, blah, blah, blah.

Me I go to the doctor or dentist or other medical professional and get a list of don'ts.
  • Don't lift anything over 15 lbs. (For the rest of your life)
  • Don't twist your back (Ditto)
  • Don't use a treadmill (Ditto again)
  • Don't drink alcohol (because of your meds)
  • Don't stop exercising (because you may never be able to start again)
  • Don't rake, shovel, vacuum, sweep, or anything like that.
  • Don't forget your eye drops twice a day or more often
  • Don't forget your dry mouth rinse
  • Don't forget your special tooth paste
  • Don't forget your new prescriptions
And I'm sure there are more but its too early in the day for my brain to work correctly. These are followed by the lovely tips such as 'eat healthy', 'get plenty of rest', 'take care of yourself', 'floss' (because what dentist hasn't told you to floss), and 'here are some more tests for you'....
I just get frustrated by the limitations in my life. Why can't I just be normal and do all the things I want to do. Museums would be nice but that involves long walks and standing around. Two things I don't do well. And before you suggest it, I'm not ready for a wheelchair anytime soon. I like walking on the beach but now am limited to packed sand at low tide. And I can't go as far as I would like.

They say a cancer diagnosis leads to PTSD and depression often accompanies an RA diagnosis. So how's my mood? I have drugs for that. And therapy. And a lot of frustration.

Sunday, May 17, 2015

Transition

I miss our cat. I missing having a cat. I like have a warm fuzzy kitty to snuggle with as I sit around and recover from whatever my latest overexertion has been.
My husband has told me not to say things like 'we are thinking about getting a cat' because then we are instantly offered one, or two or three... This has already happened.

I grew up with cats. I lived without cats for a long time because I didn't live where cats were allowed. I met my husband and he came with a cat. We bought a house and the cat ruled until mid-April. It was a very difficult time when we had to put him down but he was not doing well at all. But he was a great comfort to me when I had health issues.

I admit to looking at pet adoption websites. My husband thinks I might go out and adopt a cat without him. I would never do that but I like the idea of keeping him on edge. We have made a deal that we will get two cats (he wants) or three cats (I want) at the end of the summer when our travels are done for the year.

Shere Khan left some large paws to fill. He would bring us his captured mice from the kitchen. Or the time he walked into our next door neighbors house and went upstairs and slept on the bed in the master bedroom. Or he would go visit the neighbors for treats and snacks. Or he would walk around another neighbor's house and their dog would go nuts inside. These are all true stories. (He really did go into our neighbor's house and sleep in the master bedroom.)

But I am plotting to what cat I would want to adopt. Double paws, short hair, larger sized sound good so far. As my health declines, having a cat has been more important. I want to be greeted at the door and have someone to snuggle when I have a bad day. But I will be patient, and plot for the ideal cat.

Saturday, May 16, 2015

Not so restful sleep

I have lots of problems sleeping. Its tough to have ailments which cause both fatigue and insomnia. So being the good patient that I am, I spoke with my doctors about getting some sleep aids. I was prescribed one and given the caution that it can cause weird dreams. And it does. Yowza!

I get the weirdest dreams with places I have lived piled up on top of each other, with different friends, family members, pets, etc all mixed in together. I wake up feeling all agitated. I cut the dose to half a pill. Then I tried adding some anti anxiety meds, which leave me in need of a nap.

This clearly isn't working. I wake up having slept but with a knot in my stomach. I need a new plan here.

So back to the damn doctor I go. As if I need another doctor appointment.

Friday, May 15, 2015

Choosing the advice to follow

I get a lot of advice on how to be healthy. And I find even more in the media. So my problem is which pieces of advice to follow and which to ignore. I finally have made a decision. I will only follow the advice I like.

For example, if advice includes eating more dark chocolate, count me in. But if it says eat more tofu, no way. This morning alone I have seen advice to drink more coffee to protect against breast cancer recurrence, vegetarians should eat more fish to prevent colon cancer, and cereal is a superfood.

I am not a vegetarian but we do eat fish at least once a week. I am drinking coffee as I blog. I did try some instant oatmeal (not something I usually eat) this morning but apparently it had been in the pantry too long and is now in the trash. I am having Icelandic yogurt and a banana instead.

I get so much advice, I feel overwhelmed at times. I get too much advice. Every doctor gives me advice. Friends give me advice. The media gives me advice. I give up. I think I am smart enough to make my own decisions now and will continue to listen to new medical advice but am done trying to follow it all.

Thursday, May 14, 2015

Times have changed

I am not a Mad Men fan. It just has never had much appeal. We are now facing the last episode this coming Sunday and then it will go off the air. I have been intrigued about the thought of so accurate representation of life in the mid-late 1960's. But I have never bothered to watch it.

I found something online yesterday which talked about last Sunday's episode where Betty goes to the doctor after a fall for rib pain only to learn she has advanced lung cancer. But the doctor won't tell her until her husband arrives. The Huffington Post reviewed the show and spoke to the CMO of the ACS:

"According to Dr. Otis Brawley, chief medical officer of the American Cancer Society, the portrayal of Betty's care was almost entirely spot-on: A woman diagnosed with lung cancer in 1970 would have been given the patronizing care that Betty received. Though not a fan of the show, Brawley watched the episode and explained it was par for the course back when “cancer” was a generally whispered or unspoken word, and the medical community was generally patronizing to women as well as cancer patients.

“I can tell you that there was misogyny in medicine, and I can tell you there was actually a time in the United States when it was common not to tell people they had cancer, but they told the family,” Brawley told The Huffington Post. "I can tell you that there was a time when many people did not even say the word ‘cancer’ or simply used the words ‘Big C.’""

He adds that the reason it was so patronizing was that there was little if anything that could be done. At that time, there were a few chemotherapy options but lots of discussion on if they even were helpful.

I remember when Betty Ford announced publicly she had breast cancer. She and Shirley Temple Black were the first to make this announcement publicly and helped break down the barriers to make cancer spoken, not whispered. Less than a decade after that, I had my first cancer diagnosis in 1981. A few years ago, I met a woman who was diagnosed with thyroid cancer around 1980, and her parents never even told her about the diagnosis.

I am so glad times have changed. We may not have a cure for cancer but we can at least talk about it.

PS extra points to everyone who can watch that gif for more than a couple repetitions without getting the beginnings of a headache or getting dizzy.

Wednesday, May 13, 2015

What's in a name?

Who ever said that? I can't remember but it doesn't really matter. However WHO is now looking at names for some diseases that stir media hype, bias, and fear. Mad cow? The words alone make me think of the bicycle scene in "Butch Cassidy and the Sundance Kid" where Paul Newman gets to see the whites of his eyes.

Asian bird flu doesn't make me think of the Far East but of the Chinese ducks that were in a favorite story from childhood.  West Nile virus makes me think of the Egypt and wonder if it came from crocodiles.

WHO wants names of diseases to reflect what they are not where they are from or found. They want references to diseases not to include types of animals, places, people, or cultures or occupations. Some other names under attack are Alzheimers and Lou Gehrigs and Lyme disease. I am sure you can think of more.

The problem with these fancy names is the panic and bias that ensues in the public as a result. Who wants to go to Asia if you can get the Asian bird flu? Or Egypt if you can get West Nile? Or Lyme, CT if you can get Lyme disease? Swine flu means you don't want to eat pork or go visit a farm.

These name makes it easier for people to relate to and the hype and fear to ensue. If the new flu is called H1N1 or 2016 highly transmissible flu, would you stop eating chicken or pork?

"As the WHO announcement stated, scientists as well as national authorities and the media should take care early on to give a name that is more responsible and accurate."  

Tuesday, May 12, 2015

When do we start feeling old?

Cancer diagnoses have never made me feel old but lots of other things do.
  • Having clothing longer than my co-workers have lived
  • Being older than my bosses
  • Being older than my doctors by a decade or so
  • Referring to young people as the younger generation when discussing clothing styles and tattoo preferences.
  • Remembering the good old days when you could get bleacher tickets to the Red Sox to sit on benches for just a couple of bucks.
  • Remembering black and white TV with three channels, five ice cream cones for a dollar, movies for a dollar.
  • Remembering when computers were for dorks and geeks.
Being told I am too young to have all these ailments does not make me feel old. It makes me appreciate being so young.

Monday, May 11, 2015

Strategizing

I think I am finally figuring out how to manage my own health. Call me slow but I am finally getting there. I try to be a good patient. I take my (huge pile of) pills every day and show up for appointments and all that. Sometimes I even try to take a step back and look at the gigantic huge big picture of my overall health.

I am trying to be even more proactive about my health. I know there are on going issues that I need to tackle - lose weight, keep eating healthy, and getting regular exercise. But I am also aware of many other issues that I need to work on. Primarily coping with the side effects of my medications and treatments. That's a big one.

I take methotrexate (MTX) for my rheumatoid. It is also a chemo drug but in lower doses it is used to treat RA and other ailments. One side effect is that it keeps my immune system so low that I keep getting sick. I have had at least two bad colds already this year that caused a week or more absence for work. I am also on two prescriptions for other side effects.

I decided I need to cut MTX out of my life so I talked to my rheumatologist last week about getting off of it. So for the next 8 weeks I am cutting back on it and increasing another prescription which has fewer side effects and shouldn't have as much effect on my immune system. We will see in 8 weeks if I have more RA problems. And if I don't get another bad cold.

I need to strategize (Is that a word? Spell check says not but I'm using it as it makes sense to me.) some more about my health.

I know losing weight would be a big help to me. But I can't exercise more so I guess I need to eat less. I have more upcoming doctor appointments and I have to do some thinking about changes that I might want to make.

Sunday, May 10, 2015

Which support group?

I am a huge fan of support groups. With my first cancer diagnosis (thyroid) in 1981, cancer support groups were for old people, not for college students. (And back then cancer was whispered, not shouted.) With my second cancer diagnosis (breast), I immediately joined a support group (because I was not going to let cancer suck more years of my life). I actually attended two different breast cancer support groups over several years. They were great for me and provided a lot of emotional support group.

I also tried attending a chronic pain support group a few years ago. It was okay, but not very convenient for me and I didn't instantly connect with anyone. It was a big group as well with a range of ailments and ages.

Now I have a new therapist and she suggested I join their new fibromyalgia support group. I am a bit iffy on that. I think my hesitance comes from the fact that my health issues are not as focused on fibromyalgia or any single ailment.

As my blog has changed over recent year, my health has changed as well. I do not have a single focus for my health now. I have multiple ailments with multiple concerns.

I don't only focus on my annual mammogram and follow up with my oncologist any more. I focus on my annual mammogram and follow up with my oncologist and my rheumatologist appointments and my pain management appointments and my endocrinologist appointments and all my related tests and scans.

I need a support group for people with breast and thyroid cancer and fibromylagia and rheumatoid arthritis and bad backs and lymphedema and chronic pain and fatigue. I don't think there are any of those. This is why I have a therapist so I have a personal support group. I think that's the best I can do.

Saturday, May 9, 2015

Fish cancer

This is just icky. Fish caught with cancerous tumors on them. I would never want to eat them, swim in the water with them, or eat anything else which came out of that water. Icky poo!

'...we find young-of-year and now adult bass with sores, lesions and more recently a cancerous tumor, all of which continue to negatively impact population levels and recreational fishing," ...

"If we do not act to address the water quality issues in the Susquehanna River, Pennsylvania risks losing what is left of what was once considered a world-class smallmouth bass fishery,"...'

And

'...there was no evidence that cancerous growths in fish are a health hazard to humans. But she warned that people should avoid eating "fish that have visible signs of sores and lesions."'

Eating cancerous food sounds absolutely disgusting. But to me this really is a sign of a real environmental problem. If fish are getting cancer in the water, what impact is it having on people and other animals and birds in the area? I would be greatly concerned about my own personal health if I lived nearby.

Friday, May 8, 2015

Chemo brain starts with diagnosis

There has been a fair amount of research on chemobrain in recent years - yes its real. but new research shows that it starts at cancer diagnosis with the resulting PTSD. So basically you don't have to have chemo to have chemo brain. You just have to have the diagnosis.

So chemo brain or cognitive function disorder comes from stress. I definitely understand this. The new research did explore other possibilities in that cancer could impact certain thingies in the brain. But I'm sticking with stress.

You know if you are in a stressful time period or situation, your brain starts to run a mile a minute and you can't remember anything. I think we all remember where we were when we heard those words 'you have cancer', but then do we remember much else from the next few moments? And then we all start to panic on some level 'am I going to die?'. Then our brains dissolve further.

The ensuing days, weeks and months are full of stress as we try to control our panic and figure out how to handle our treatment as we make decisions - surgery, chemo, and more. Our brains keep melting. Then the chemo drugs start to have an impact on more brain cells. By the end of it all, we feel we can't remember anything.

I think for me my brain further went to mush with the onset of fibro fog, but I can't remember.

Share It