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."

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.

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.

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.

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.

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.

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...