Monday, February 29, 2016

Patient vs Doctor

I often write about what its like to be a patient. Well, not just often, more like all the time. Why? Because I am a patient who is a frequent flyer at the local hospital. Sometimes I know more about the hospital than its employees.

As patients we go through our medical adventures and misadventures and move on. That nasty test is over. The bad results are digested and a treatment plan comes along. We have our emotional highs and lows and we keep on going.

We hear about the potential risks and problems at each treatment. We hope for the best and sometimes cope with the worst. We develop ways to cope and move on and grow.

But what about the doctors and nurses and other medical professionals? I have never really stopped to think about them and how they cope.

First of all in their jobs, every day is like Groundhog Day. They must deliver good and bad news, administer tests and watch their patients react. They help cure and heal some patients, and are forced to watch others slip away. That must be incredibly difficult. It must represent a failure for those who took the oath to 'do no harm'.

They work hard to help their patients and then some they can't help. So what is your job? Engineer, cook, parent, soldier, butcher, baker, candlestick maker? What if what you make is a total flop? How does that make you feel? But what if its not just a flop but someone loses their life?

And what about the further burden of a patient who follows their advice to a T and still doesn't make it?

The emotional toll must be incredible. I could not imagine. And I had never ever thought about it until I read this article on a doctor who writes prose and poetry as an emotional outlet to cope. That's not that much different from being a patient.

Sunday, February 28, 2016

The hanging sword over your head or embrace each day

I read an article this morning on how a cancer diagnosis changed a couple's perception of life. Without a cancer (or other icky) diagnosis, do we view the definitiveness (yes that's a real word - I had to look it up) of our lives differently than with one? Does the hanging sword called cancer, redefine us, or how does it redefine us?

I struggle with this one sometimes. I was barely an adult (19) when cancer first dropped into my life. Therefore I am not sure I would know how to be an adult without cancer. But have I learned to embrace every day for what it is? I'm not sure either.

I do agree that once cancer appears, life in Cancerland is very different than life without cancer. At my second diagnosis I was pushed deeper into Cancerland than I was before. So as I was pushed in deeper, I pushed back and focused on taking better care of me emotionally. I was more sure of what I was not going to let cancer do to me again - it was not going to take any more fun out of my life. Or suck any more time emotionally from me.

Now almost 9 years from diagnosis number two, do I still feel that hanging cancer sword over my head? Yes. But I feel I have pushed it up higher and further away. Has it changed me? Yes, and I hope I am a better person than before.

After my first diagnosis, if someone I knew also knew someone with cancer, they would somehow get me in contact with them. I didn't always feel comfortable talking to someone I didn't really know who had cancer. Because I had cancer, I was supposed to want to talk about it? I didn't. And that wasn't the best way to cope with my health.

Now I reach out people I meet with cancer, because I don't want anyone to go through all the same hell I went through. I want to help them push that hanging sword further away. Let them embrace their life and not live under that sword.

From the article I read:
"The gift of the diagnosis — and it’s a tough one to embrace, but what choice do we have? — is to dedicate ourselves instead to embracing every day with the particular passion that comes from knowing the number is finite. I am just as glad I don’t know the number of days remaining to either one of us, but I know every day, I have one less. I had better make the best of them all."

Saturday, February 27, 2016

The Biden Moonshot to End Cancer

I have not thought much about Joe Biden's moonshot to end cancer. But it is increasingly being covered by the media and I am learning more about it.

I have a few thoughts of on moonshots. Or long shots. Sometimes they do come through and create interesting and exciting results that might never have otherwise been discovered. But many of them just become another long shot that didn't work.

However I do appreciate the fact that a new effort is being made in this on going effort to try to find a cure for cancer.

I also do appreciate the fact that this new effort is working on new angles. one I heard of most recently is using the huge database at the Mormon church to research cancer cases. I hope they leave no stone unturned in their efforts.

Friday, February 26, 2016

You can't put a dollar value on life

The latest news out of the pharma industry is that they want to put a dollar value on a month of life. I do not think this is possible. But they want to so they can continue to justify their high priced medications.

I think many people when faced with the knowledge their life is about to be cut short would do anything or pay any price to be able to stick around longer. I am sure I would, unless I was in horrible pain or had no quality of life.

To start with how would you figure out the monetary value of life, or a month of life even? You can look at the basic necessities - food and shelter - or lost salary, or medical costs to keep someone alive. But what would that mean? I just don't understand this concept.

And to try to pull a number out of thin air to justify the cost of a medication is nonsensical.

Logical pricing comes from cost to design and create and throw in some supply and demand. And the pharma industry's way of a putting development costs from multiple drugs that didn't work out in to the development costs from a new drug and pulling a number out of a hat for perceived value for the basis of pricing, doesn't really work. And always end up in their favor.

I could never put a value on my life. Its not something that came with a number on it. So let's not try to create something that doesn't exist.

Thursday, February 25, 2016

I had the wrong question

I was going to ask my rheumatologist if my rheumatoid was in remission. That was the wrong question to ask.

I should have been more concerned about joint erosion and disease progression.

Damn.

So I got to get x-rays and ultrasounds of my hands, wrists, ankles, and feet. I was tired by the end of the x-ray session. I am not good at standing around these days. Particularly while standing in a specific position and not moving while they take issues. All of my feet and ankles had to be weight bearing. That was Tuesday.

Yesterday I went for an ultrasound of my right hand and wrist. I was looking at the images on the screen. I asked the tech how she could tell what was what - the answer was a lot of training. I said the image of my wrist looked like the ocean in an old print of an ocean with a ship.... She agreed.

I will get the results at my next appointment. And then we will discuss additional treatment options. The problem is that the TNF (tumor necrosing factor) which is some how part of the new fancy biologic treatment options. So my rheumatologist has to talk to my oncologist first.

Wednesday, February 24, 2016

Are You Cured?

While leaving the hospital yesterday, I followed this car out. While rounding all the corners in the parking garage, I couldn't help wondering what they could be cured of, or what it would take me to get a similar license plate.

I do not consider myself cured of either cancer. They are just in hiding right now. Actually, if you can tell me there is not a single cancer cell left in my body I would consider myself cured but since there are no guarantees in Cancerland, I'm not cured.

Also there are no cures for rheumatoid or fibromyalgia, or degenerating disks. So I clearly wouldn't consider myself cured yet.

This lead me to wonder, when do you consider yourself cured? Or at what point are you cured? I mean skip the common cold. You get a cold, you get over it - that means cured. Or a broken bone eventually heals and you are good to go, so that would make you cured. Or is 'cured' the wrong word to use there?

If you have an organ transplant are you cured after that? As far as I know, you are then on antirejection meds for a long time and would require frequent medical care. But does that make you cured? You could have cataracts and then have surgery, are you cured then? That I would think.

Too much to ponder this early in the day. But I do welcome other's thoughts on this.

Tuesday, February 23, 2016

My doctor confused me

I went for blood work last week for two doctors. As usual I got the results the next day, or so I thought. This morning I got more blood work results back. And I don't understand them.

These are more thyroid blood tests. Originally I got my TSH level back. Then this morning I got T4, thyroglobulin AB and thyroglobulin. I didn't get my T3 levels. I don't always get all these thyroid tests done so I don't understand them as well as my TSH levels.

And why all of a sudden do I get all these blood tests? To be fair, the hospital switched to a new computer system last year with a patient portal where I get my test results directly instead of getting them from my doctor's office or the records office. So maybe they did these tests and I just wasn't aware.

So it means I definitely need to call my doctor about them.... But I'll give her until the end of the week to contact me first.

I think its a vast medical conspiracy to confuse the patients. I have been blogging about this for years. If you can't cure them, confuse them.

Monday, February 22, 2016

How strong is that 'little voice'

Tomorrow I have a doctor appointment. Its not a big deal, just a follow up with my rheumatologist, including a discussion of my blood work last week. On the surface its not big deal. I don't expect any big news. Maybe a little tweak in my medications at the most.

But there is always a little (tiny cancer 'what if') voice in the back of my head at every doctor appointment. The question is always 'what if' something isn't right that leads to more testing that leads to something else which finds something 'bad'.

I can't help it. That little voice is an evil thing. Learning how to balance that evil voice is a lifelong journey after cancer. It never goes away. Keeping it quiet is the challenge.

When I had my hysterectomy before breast cancer, nearly 25 years after thyroid cancer, I was compelled to ask my surgeon if there was any chance of cancer there. I couldn't stop myself from asking. She assured me that they would 'slice and dice' to make sure there was none.

And there was none.

After breast cancer, that evil little voice reared grew in volume again. With a vengeance. Its only been over 8 years but that voice tends to sneak into the back of my brain. It tries to tell me that some ache or pain could only be 'really bad'. I can't let it run my life.

But I will go to the doctor tomorrow and tell that stupid little voice to keep quiet. I hope. Maybe if I could leave it behind that would be better.

Sunday, February 21, 2016

Finding more rest

Yesterday I did not over do things at all. I did not go help a friend as planned (she didn't need me), I ran a few errands and mostly stayed home. I took a nap. I snoozed, not completely asleep, nor really awake, for an hour and a half. Then I finally felt better and we went out to dinner. After we came home, I went to bed. I woke up when Evil Kitty bit my toes.

However, I am not out of the woods yet. I need to keep up on my rest level up.

Getting behind on rest is like getting behind on pain for me. I know you can't really catch upon sleep but I can get catch up on rest, sort of. If I stretch myself too thin, I can compensate by resting more to feel better. This is my goal for the day. Its not medical science or anything but it does make me feel better.

After all these years I know my body, better and better. Its just when a medical hiccough kicks in and messes me up that I have issues. I have learned the value of a good night's sleep and resting as needed to get me through my days. Do you remember having to take naps as a child? And hating them??? I now appreciate them! And just lying down for most of the day.

But in some ways I am a little old lady...  Who is 37.... Still.

Fatigue sucks. Did anyone find a cure for it yet?

Saturday, February 20, 2016

I ran out 'rest' before I ran out of 'week'

I had a tough week. I didn't have enough time to rest. It was very difficult. Last night I fell asleep on the couch at 8 pm and then got ten hours of sleep. I may need a nap later. (The cats don't understand that I need to sleep.)

This was my week: Monday was a holiday and we had house guests. Tuesday I didn't go anywhere but I got a lot done at home and got up with my husband and made him lunch before he left for work at 7. Wednesday, Thursday, and Friday the electrician was here. While I greatly appreciate having a house where all the outlets work, having outside outlets and exterior lights, as well as ceiling lights in all the rooms, I had to get up and be dressed long before he got here at 830 am. All three days I went out and ran errands for a few hours when he was here.

You think that sounds like nothing. But it was hard for me. To help you understand, the biggest issue I face on a day to day basis is not pain, it is fatigue. (Except when pain decides its time to rule and I am miserable.) You can treat pain with medications, therapy, and more. You cannot treat fatigue. There is no magic pill for fatigue. You need to lie down to recover from fatigue and wait until you feel better. And that takes time. Lots of time. And I felt weird about taking a nap while the electrician was here.

Today my plans are to give my husband a list of stuff he could take care of and then stay in bed for a few more hours. I have a new stack of books from the library, a DVR full of shows to watch, and cats who like to snuggle. I also want to get to a friend's estate sale to provide moral support but that will have to be a bit later. We will then go out to dinner and I will again go to bed early. And I hope to sleep later again tomorrow. And take another nap.

Friday, February 19, 2016

Am I Out Of My Mind?

When I was a child, between home ec (remember that class?), 4-H and girl scouts, I learned to knit, crochet, sew, embroider, and a bunch of other kinds of needlework. Then when I was in chemo, a friend, who was sick of me calling her to whine, informed me I needed a hobby. (You know who you are JB!!) That lead to a yarn addiction which lead to craft shows which has now lead me to be totally out of my mind.

I have volunteered. (My husband has another word for 'volunteer'). I have suggested and it was agreed that I will start a needlework/knitting group at a local cancer support center every two weeks. WHAT WAS I THINKING!?!?!?!?!

Actually, knitting and crocheting helped me immensely during and after chemo. Now I can share that with others. There are lots of studies out which say that crochet, knitting, and other needlework can be as beneficial as meditation. I find meditation boring but I really enjoy knitting.

With all knitting groups I've attended, you knit and chat. Since this is at a cancer center, I am sure our conversations will include neuropathy and how it 'helps' our needlework in addition to 'discussing' our cancer experiences.

The group doesn't start until March and will run for a three month trial period so I will see how it goes. (I really hope it goes well.) Because its organized through the cancer center, someone else will take care of the finding people, keeping track of people, and scheduling. All I have to do is show up and help it get started (I think). Maybe someone else can help me with my crochet skills (which have room for improvement).

Thursday, February 18, 2016

Stupid blood work

I get blood work done all the time, or so it feels. Actually its about every two months for one doctor, every six months (or two or six weeks if there is a medication change for another), and then for anyone else who wants it. Sometimes I feel like there is a vampire who wants my blood.

Yesterday I had to go for blood work for one doctor's appointment next week and for another doctor's follow up request. I can't just go for blood work. I need to plan its so its before my weekly injections. Anyway I got the results this morning.

My thyroid tests are way off. This means my endocrinologist will call and probably want to change my dosage or at least have questions for me since the last time I had this test done my results were completely different than this or from the time before. Think yoyo results.

My CBC is partly okay and partly worse than normal. My MTX levels (the blood work you need with on methotrexate for my rheumatoid) are also partly okay and partly worse than normal. This means my rheumatologist may also make changes when I see her next week. Both changes, if they happen, will require additional blood work to follow the results.

I hate going for blood work. Its complicated (see above). I hate needles. They can only use one arm so options are limited. I have scrawny veins in my elbow so sometimes they have to 'look around'. Or if they wimp out, they use the big vein on the back of my hand - which is painful. Then I get to play the 'let's see what the latest results are' game and see if I need more medication changes. And go for more blood work.

Wednesday, February 17, 2016

The 'cancer' spotlight

A woman wrote about random acts of kindness by strangers due to cancer recently in Cure Magazine online. Sorry I'm not interested. Unless you are sitting in the waiting room of the chemo infusion area with a similar look, don't bug me.

Okay, this just irritates me. You know when you were walking around with that chemo pallor with a hat or wig on and feel like crap and someone you don't know from a hole in the wall comes up and gives you unwanted advice or just tries to be extra nice. Its one thing to have someone open the door for you but another completely to want to talk or share their 'cancer' story. Or the treatment their second cousin's neighbor's dog walker's uncle's cancer treatment that you should try. Or that they died.

The biggest thing for me when I was in treatment was that I wanted to be treated like a regular person. Not a cancer person. I was not interested in broadcasting my ailments to anyone else. Or to be on the receiving end of unwanted information.

Call me grumpy but I never liked the spotlight.

Tuesday, February 16, 2016

Too busy off line

I have spent most of the weekend busy off line. This means I have talked to people, watched a movie with people, had meals with people, and just generally did a lot of stuff that did not involve being online. Personally I think its a good thing.

This is why I haven't been blogging. Sometimes I think I have set myself up. I usually blog every day and if I don't blog, I wonder if anyone thinks I have had some kind of disaster or something.

But I am fine.

Actually I think it was a very good thing to be off line. I barely kept up with my email. I think we spend too much time online sometimes. We hear about the teenagers who are too busy texting to talk to each other. But what about the adults who spend too much time blogging, emailing, or tweeting to have discussions face to face.

I started blogging as an emotional way of coping with my continuous health disasters. But I have not forgotten about the off line 'me'. I don't think I will ever stop blogging but I can't only be online.

Saturday, February 13, 2016

Is it too early for a nap?

I am already back in bed, exhausted. I need a nap.

Yesterday I did too much and was running around all day. I went to bed early and wanted to sleep late. My husband was great and got up quietly.

The (good) cat was another story. He came into the bedroom at 515 AM meowing for me. When he is upset at all, he needs to find me to make him happy again. He is not good about being quiet with this. Its a behavior change since he had his big adventure and was lost for 9 days.

All that it means to me is that its 10 AM and I need a nap. We have house guests coming tonight until Monday. We are having a family dinner here for 10 tonight. I already made brownies and need to finish the sweet potatoes. (Later a ham will go in the oven and someonetobenamedlater will make the salad.) I also need to make a lasagna for tomorrow's belated Christmas dinner with more relatives. Again, someonetobenamedlater will make salad and serve everything.

The downside to ailments like mine, is getting tired and needing to rest before doing more. The upside is that I will delegate to everyone else. I am surrounding by 'unknowing' volunteers. And if I am really tired, I can bail and go to bed early while my husband plays host.

Yes its rude to bail on guests but as my health has tanked, I have learned that I can't do everything and sometimes I just need to use common sense and say 'how can I not overdo so much that I can't participate in anything tomorrow?'

Right now I will lie in bed and be lazy and maybe snooze.

Thursday, February 11, 2016

When doctor's give orders

I ran into two instances where doctors were giving orders, to patients. Basically they were giving the patients orders to obey them and make them toe the line.

In one instance a friend of mine who was a heavy smoker was told he had to prove he had quit smoking for a month before the doctor would perform his back surgery. Yes, I know smoking is a nasty dirty habit. Yes, I know it can do horrible things to your lungs and the rest of your body. Yes, I know quitting smoking is a very good way to improve your health.

But, the doctor had his surgery scheduled and then he was in a fender bender so it had to be delayed. Now the doctor won't schedule his surgery until he has quit smoking. So if my friend needed to quit smoking because of surgery concerns, why did the doctor not make this an issue before? Why is it now? This does not make sense.

Then another friend who is a grandmother and is long since done having children wants to have a hysterectomy. She even has fibroids and her doctor says no. She's not ready? What? He's not giving her a real answer.

In both cases, I feel that the doctors are asserting their opinions without thinking of the patient's concerns. This is not right. I think both patients should find new doctors. I would not put up with that crap from any of my doctors.

Not a good start

Its early and today is not off to a good start. I can't find my damn glasses and am wearing an old pair which will give me a headache soon. I am exhausted and I have to go to work for a few hours. (My replacement quit and I said I would go in and clear up any disasters for a few hours.) I would skip work but if I do, I don't think I can get there for a week due to my schedule.

I would prefer to stay in bed for the morning and not go anywhere. This is why I 'retired' so I wouldn't have to work when exhausted.

What I need to do right now is to get up and look for my glasses. I think I probably fell asleep wearing them and they are wrapped up in the blankets somewhere. This means I need to take the bed apart and see if I can find them (before I get a headache). This is not conducive to resting. Grrr....

Wednesday, February 10, 2016

Getting organized

Now that we are settled in to our new house, I am doing something I never thought I would do: Apply for SSI disability.

I quit working last fall when working four hours in a day made me have the need to take a nap. My fatigue levels are very high. For example, if I go out for  more than a few hours, I need to come home and lie down. I have been known to walk in the door and head straight for the bed or couch - which ever is closer - before anything else.

When I was diagnosed with fibromyalgia and rheumatoid in the fall of 2012, immediately I began to have problems with fatigue. I left my other job at the cancer center because it took too much out of me. It also required evening meetings and weekend events which I could no longer do. First I cut back on my hours by by June of 2013, I left completely.

Then I tried to work closer to 20 hours at my remaining job (the one I just left) but over the next two years I had to cut back my hours because I couldn't last through a 6 hour day, three times a week. Then it was 5 hours a day, and then 4 hours a day. Then it was two days a week instead of three.

I am a fan of social services programs which provide help for those in need. But I am not in favor of those who abuse them. I do not agree with people who feel they provide a free ride in life. I never thought I would be the one who would need one.

But in a couple of weeks, I meet with some one at the local office to fill in the paperwork and begin the process of applying for benefits. I do not expect it to happen miraculously, instantly. I assume it will take some times and appeals to get through the process. I realize I could be denied and not receive the benefits. But I have hope.

Tuesday, February 9, 2016

Too much advice = too much confusion

With every ailment, comes a list of advice. Do this, don't do that; eat this, don't eat that; these exercises, not those.That's fine with one ailment. But with my list of ailments, it quickly gets very confusing.

I subscribe to multiple Google Alerts - one for each ailment. Each one sends me a new list each day of articles or blog posts or some other piece of information found on line on each topic. The daily melange can include anything from somebody ran a race to fund raise for someone with one of the ailments to a medical research advancement. So there can be everything.

Including advice. Today's advice included diet secrets for arthritis, prescription review for fibromyalgia, a male oncologist who got breast cancer, and some woman and her family get lots of support after her thyroid cancer diagnosis. First of all its too much information for me to digest this early in the day, never mind later in the day.

Second of all, if I tried to select a specific topic (food/lifestyle, for example), it gets very confusing. Eat this, not that; drink this, not that; do cardio, skip cardio and do yoga, but my doctor says no yoga. Aaarrrgggghhh!

I give slightly more weight to advice from medical professionals, especially from my doctors. If one doctor gives me advice that conflicts with another doctor, I will ask what I should do.

So how do I handle all this? I do what feels right for me. That's the only way to deal with the piles of advice.

Monday, February 8, 2016

Just because, doesn't mean 'right this second'

When you get medical, or any other kind of, bad news, the first reaction is "FIX IT NOW BEFORE I DIE!!!!". You then start making decisions as you learn about your choices. And proceed to get your life back.

But.... What if the news is wrong or has been misinterpreted? Then what?

This is especially true now with BRCA and other gene testing advances.

"In a paper published in the Journal of Clinical Oncology, the Peter Mac team has demonstrated that some genetic tests for breast cancer may be misinterpreted, potentially misinforming the affected families and risking unnecessary preventive treatments.

“It is now possible to screen a large number of genes at the same time – known as panel testing – at a fraction of the cost previously required to sequence just one cancer-causing gene such as BRCA1,” according to Professor Ian Campbell, Head of Peter Mac’s Genetic Cancer Research Laboratory.

“Understandably, this has increased demand for such tests amongst health care providers and patients concerned about their family history.

“However, while the increased risk of breast cancer associated with some genetic mutations is proven, for others there is a lack of robust scientific data to suggest preventative treatments are required.”"


There is a fair amount known about the BRCA genes and their impact on a patient for increased risk of breast cancer or other ailments. But not as much for the other genes. So you do not want to start making a lot of decisions right away. You do n't want to treat the information about other mutations the same as BRCA mutations. I guess the message is that you need to educate yourself on what you are being tested for before you make decisions


Sunday, February 7, 2016

Take your pills

An every day conversation with my husband:

Me: "Did you take your pills?"
Him: "Let me check. No"

And my lessons from last weekend stand by me.

I am not alone. Drug companies are creating programs to help patients take their pills. Yes its part of a money making program. The more people who take their pills the more they can sell - as the cynical side of me says. But the real problem is people who do not take their pills get sicker and sicker. This drives up the cost of medical care in the US. (Which uses up more health care money so big sticker medications are in the spotlight for a smaller share of the remaining money.)

Time to stop being cynical.

Think of it this way, a patient goes to the doctor for an ailment. The doctor prescribes a medication for which the patient never fills the prescription, or if they do fill it, they forget to take it. If they had taken their medication regularly, they would feel better and not need the surgery they eventually had. Medical research is done so that we get better and live longer.

One of the problems is affordability of the medications. Pharma companies have long since had payment options for the uninsured which does help some.

Another problem is that some people get the mind set that no pill will help them. Or other reasons they come up with not to take the pills. Or side effects, fear of side effects, or no perceived effect by the medication. Along with basic forgetfulness - something we all suffer from time to time. A friend hurt her back recently and said she had a bad night the other night and was in a lot of pain - she forgot to take her prescription....

My message is "take your prescriptions as prescribed and if they don't work, cause side effects, or you can't afford them, call your doctor for options."

Saturday, February 6, 2016

New bed

I consider a power bed to be something of a medical requirement, and not some extra expense at this point in my life. My husband thought it was an expensive luxury and wasn't too happy I insisted on getting one. We can just say we have a difference of opinion on the subject but as I said it was the one thing I wanted with a new house, we got one. I need to do everything I can to make sure I can sleep.

The new bed finally arrived yesterday, in the middle of a snow storm (expected accumulation of 4-8" which turned into 10+" and a six hour power outage). It was snowing enough that we were concerned it would still be delivered as scheduled. I called to confirm around 11 am and they were out on the road. So I called the plow company and he said he would be here in an hour or so. I crossed my fingers that the plow would get here before the delivery truck. Of course not.

Our new house has a fairly long driveway with a hill sloping down from the road to the house. The delivery guys showed up and parked on the street as I doubt they could have gotten the truck back out of the driveway.  They slide the base of the power bed, which is fairly heavy, down the driveway in its box. It was a big sled essentially. They unwrapped it outside and set it up in the bedroom. Then they dragged the old mattress and box spring up the hill and slide the new mattress down the hill (definitely got a workout).

My husband got out of work early because of the storm. When he arrived he had to leave to go run some errands because the driveway still wasn't plowed. I called the plow company again.... An hour later the driveway was plowed and my husband could actually get in the house.

Due to the lack of power, I couldn't show him how the bed goes up and down and you can adjust it and get really comfy. He did lie down on it to read and I could hear the snoring from the living room. He also admitted that it was comfortable. As soon as the power came on, I readjusted it so we were really comfy.

Then when we went to bed last night, I raised the head of the bed a tiny bit (because one of the real points of this bed is that the head of the bed could be raised to reduce snoring). This morning, my husband slept in a bit. He admitted to sleeping well. Me? I was very comfortable. It was every penny. A new power bed is clearly better than a 15 year old mattress with a memory foam topper.

Friday, February 5, 2016

Put it in a drawer and walk away

I have been unpacking and organizing for far too long now. But I am making progress. At our old house, where we lived when I went through my breast cancer (mis)adventures including surgery, chemo and radiation, after treatment I stuck my wig and chemo caps on the shelf in the closet. Sometimes while looking for something else, I would come across them and get the unwelcome memories.

This morning, I made a better decision, I stuck them in the bottom drawer of a cabinet and they will stay there, hidden away. The only things in the drawer are cancer related - wig, chemo caps, wig stand, a few books on coping with cancer. Nothing else.

That means I have no other reason to open that drawer unless... unless....

Let's not go there. Ever, I hope.



Thursday, February 4, 2016

Rheumatoid Awareness Day, Not Arthritis Day

I was wrong. Tuesday was not Rheumatoid Arthritis Day, it was Rheumatoid Awareness Day. This was started in 2013 by the Rheumatoid Patient Foundation. For 2016, they asked people to select one of their Rheumatoid Disease Facts and blog about it. 

In addition to the fact that I was wrong about Rheumatoid Awareness Day, I was also not aware that rheumatoid arthritis is only one symptom of rheumatic disease. 

So I did a little research. Here is a full list of all the other rheumatic diseases with a brief look below.
  • Bursitis. A condition involving inflammation of the bursae (small, fluid-filled sacs that help reduce friction between bones and other moving structures in the joints) that produces pain and tenderness and may limit the movement of nearby joints.
  • Fibromyalgia. A chronic disorder characterized by the presence of tender points—points on the body that are painful upon the application of pressure—and widespread muscle pain.
  • Gout. A type of arthritis resulting from deposits of needle-like crystals of uric acid in the joints, usually beginning in the big toe. 
  • Infectious arthritis. A general term used to describe forms of arthritis that are caused by infectious agents such as bacteria or viruses. 
  • Juvenile idiopathic arthritis. The most common form of arthritis in childhood, causes pain, stiffness, swelling, and loss of function of the joints. 
  • Polymyalgia rheumatica. A condition involving tendons, muscles, ligaments, and tissues around the joint that causes pain, aching, and morning stiffness in the shoulders, hips, neck, and lower back. 
  • Polymyositis. A rheumatic disease that causes inflammation and weakness in the muscles. The disease may affect the whole body and cause disability.
  • Scleroderma. A condition in which an excessive production of collagen leads to thickening of and damage to the skin, blood vessels, joints, and sometimes internal organs such as the lungs and kidneys.
  • Spondyloarthropathies. A group of rheumatic diseases that principally affects the spine. 
  • Systemic lupus erythematosus. An autoimmune disease in which the immune system attacks the body's own healthy cells and tissues.
  • Tendinitis. Inflammation of tendons that is caused by overuse, injury, or a rheumatic condition and may restrict movement of nearby joints.
Here is the list of the rheumatic diseases that I have:

Arthritis
Bursitis
Fibromyalgia
Tendinitis

But I had no idea that all these other diseases were considered to be rheumatic diseases. But now I have learned and I hope others can learn as well.

Wednesday, February 3, 2016

Rheumatoid Arthritis Day - yesterday

Yesterday was Rheumatoid Arthritis Day. I missed it. I have a track record for missing all my medical ailment days. At least I am consistent. But RA is not a fun ailment.

Rheumatoid arthritis is different than osteoarthritis. Osteoarthritis is the kind you get from overuse of your joints - like too much tennis or running. Rheumatoid is the autoimmune kind where your body body's immune system attacks your joints. And if you are lucky like me, you get both kinds.

30 years ago patients were told to take aspirin for the pain and the focus was not on treating the disease but the symptoms. Now patients are treated aggressively so that there is less chance of deformation in your joints - translate that to less likely to need a wheel chair in the long term.

I feel somewhat knowledgeable about RA as my mother has had it since 1989. But it wasn't my body so that I didn't know that much. Clearly I wasn't walking the walk so I can't talk the talk. Once again the clear difference between being a patient and not being one.

The longer I have it, the more I realize I do not know about it. For example, I do not understand the biologics. I mean I know what they do and how they work, but I do not know about the differences between them. One thing I do know about them is that if you have had cancer, they do not like to prescribe them to you. So I may never get them. And therefore never learn much about them. 

I also know it usually starts with the small joints of your hands and feet and it is usually parallel - meaning if it affects one hand, it affects the other. Both sides of your body at the same time - just so you have more fun. I know from your hands and feet it moves to larger joints - like elbows and knees. But I am not sure about hips and shoulders as much- so that may be my osteo kicking in.

So anyway, I missed Rheumatoid Arthritis Day. So to celebrate today, I will go see my knee doctor and find out what's going on there.

Tuesday, February 2, 2016

A really big mistake

So I was stupid (and testing my boundaries) and skipped my pills for two nights. I will never do that again. Ever.

Yesterday I went to the gym and had a lot of pain. My left hip gave me enough pain that I thought I would have to go home. But I took a break and was okay. But I did cut my workout short because of pain issues. Then when I came home, I took it easy (mostly - but did move some furniture around) and made a point to rest some.

But then I started thinking (being dangerous again) about all the assorted pains I have been having, which are not necessarily what I expected. I had expected some fibro pain, back pain, and RA pain. However it doesn't make sense to me that my left hip has given me so many issues.

I have had bursitis in my hip but that has been under control for along time. So why am I now having so much other pain there? This is a new kind of pain, not bursitis pain. Is there something else wrong? No there can't be. I just don't have time for other ailments.

I will discuss it with my doctors at my upcoming visits but am not going to rush in for a new appointment with any of them.

Today I have nothing planned. I don't need to go anywhere. I can stay home and take care of me and continue the unpacking/reorganizing process. We now have a deadline - house guests arriving in ten days - so I have to get moving. As much as I can without causing more pain.

And I will never intentionally skip pills again.


Monday, February 1, 2016

Rethinking things

So my life has been in a bit of a transition for the past few months. We decided to move, then we started packing, house hunting, more packing, having a cold for weeks, the holidays, moving, losing (and then finding) the cat, unpacking, and unpacking.

For the first time I got up this morning and went into the kitchen and started puttering around. I moved the coffee maker to where it should be (on the counter under the cabinet full of coffee cups) instead of where we had first plonked it on the counter the day we moved in. I then started looking for things in the cabinets - to find the salt (which we do not have) - and rearranging things some more. Then I even did some tidying. Now I want to do some more puttering and cleaning. So I feel settled. Finally, and it feels good.

I have had some friends over so far. I have even reconnected with some from whom I used to live further away. Some were content to sit and chat. Some wanted to help unpack. All had advice for numerous suggestions on what we should do next - move furniture, select paint colors, lighting ideas and more. Some we will take to heart and do and others we will politely ignore.

But all this transition and change has opened a door for me to make some more changes in my life. Its not that I am hesitant to make changes but sometimes a making a few changes opens the door to making even more.

A little prod from one corner could make you rethink about why you have some connections or do some things. And sometimes they connect dots for you that you didn't really acknowledge previously. So more changes will be made in my life and I think I am comfortable with that as well.

Its not that I am trying to be vague here but I am not sure about all the changes I might make yet and have to feel things out some more. I might even redesign my blog again...