Saturday, July 21, 2018

In Pain

I was having a good day. But not any more. I mean I did have a good day. I did a bunch of things I wanted to do. I took it easy. I warped my loom. I did some knitting. I went on a couple of errands. We had dinner. This is bad.

In addition to my 'chronic' ailments I have a bad back. I mean a really bad back. It started with degenerating disks in my lower back (L4-5, L6-7 or something like that) and then I found out I had a bone spur in my neck (C4 I think?). Finally, I have desiccated disks at bra strap height - whatever that is in medical terms but its T something.

I usually do okay because of all my meds. But today it is bad. I went out and did some weeding and called Boots (the good cat). I came in without Boots and ZDpot (the bad cat) tried to run out. I grabbed him. And it was bad. I couldn't sit up long enough to watch Jeopardy.

My doctor told me no ice on my back. But its summer and I really don't want a heating pad. And it all hurts. And really sucks. (Consider me honest). I'm not sure I can sleep tonight (alcohol isn't helping either).

If anyone has advice, I would appreciate it. I am open for suggestions. I have a really good pain management team. I can get an appointment to see them. But that is not a long term solution - go to the dr, get an appointment for some nasty injections in my back, and then feel better for a while. I would prefer to be healthy for a while ever.

Okay, I'm cranky. I am in a lot of pain. I can barely turn my neck to the right - which is the direction to the TV in the bedroom. I had to go to months of PT a couple of years ago for my neck.

Honestly, I want a magic wand to wave over me and make everything stop hurting for good. But I am whining.

Tuesday, July 17, 2018

What Is A Chronic Illness?

So I blog about chronic ailments but what are they really? Medicinenet defines them as:

"A chronic disease is one lasting 3 months or more, by the definition of the U.S.National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear."

I saw another definition which defined them as one lasting a year or more. (But it doesn't really matter because they all suck.)

Just to be clear an 'acute' ailment will appear and leave. A 'terminal' ailment does you in.

Once you get a chronic illness, you are screwed. Cancer is now treated more as a chronic ailment than a terminal one - if it doesn't do you in at first and you get through treatment, you are monitored for the rest of your life. So if I count those in, I have four chronic ailments. Plus my bad back - it fits the definition of chronic ailments but I'm not sure it is really considered one.

Having chronic illnesses means you have to alter your life and lifestyle permanently. It can be very frustrating, depressing, anxiety inducing, and down right stressful. The emotional strain of having a chronic illness can actually be the worst part.

As always, your emotional side is just as important your physical side. If you wake up on a 'bad day', you just erase your calendar for a couple of days so you can take care of yourself somehow. And that lunch date that you were really waiting for is out the window. Bummer. An emotional let down - something fun that you wanted to do is gone. And so the emotional roller coaster takes a nose dive, again.

And you wonder why so many people with chronic illnesses are often taking anti-depressants. Along with a million other medications. I have three drawers full of prescription bottles that I dig through weekly to fill my pill box - the kind with a big compartment for morning and evening.

Anyway, having a chronic illness or four can just suck.

Saturday, July 14, 2018

Falling Asleep On The Sofa

I hate it when I fall asleep on the sofa. Usually it means I will wake up at 3 am and crawl into bed where I can't get back to sleep and end up exhausted the next day.

Last night, I was so tired after dinner, that I evidently fell asleep on the sofa watching TV with my husband. I don't remember that. I do remember being tired while I watched TV and waking up in bed. This morning I got to play the game of  'where are my glasses' (they were on the coffee table).

I get extra points because apparently when I basically sleep walked to bed, I remembered to take all my pills and I slept all night. That was about 10 hours of very needed sleep.

Sleep is a restorative and even more important with any ailments. I have a big trip planned for this afternoon where I will be gone for about six hours and driving for two of them. I needed the sleep so I could manage the trip.

And tonight, my goal is to get another 10 hours of sleep. But I'll have to hope I don't fall asleep on the sofa again. Maybe I'll watch TV in bed.

Friday, July 13, 2018

Wants and Needs

I had a dilemma. I was exhausted but I wanted the following:
  1. A nap
  2. A shower
  3. Clean sheets on the bed
But I really needed:
  1. Clean sheets on the bed because they just really needed to be changed and there is nothing like getting into bed with clean sheets on it.
  2. A shower because I went to the gym this morning and I really needed one.
  3. A nap would make sense after I was clean and the bed was made.
Being exhausted I knew I had to compromise.
  1. So I pulled the old sheets off the bed and put the bottom sheet only on the bed. 
  2. I lay down for 20 minutes to rest up so I could shower without being worried about collapsing.
  3. Then I showered and put pillow cases on two pillows (one behind my knees and one behind my back) and lay down again. 
  4. I left the rest of the bed making until my husband gets home from work. Two more pillow cases, top sheet, blankets, and bedspread are waiting for him.
This is my life. If my husband is lucky he won't need to cook dinner too.

Tuesday, July 10, 2018

Weather and Illnesses

Back when I first injured my knee in 2001 (a great day of skiing gone bad) my father said to me 'now you will have a knee to help you tell the weather'. I'm not sure that's true but I can really feel weather changes.

Cold is very cold to me. I have Raynaud's (as a joyous addition to anything else) where my fingers and toes will turn white down to the second joint when they get cold. The only way to get them warm again is to put them in warm water. I can't tolerate cold on my hands. In the winter, when I used to drive home from work on cold days, my fingers would get so cold I would tuck one hand under my leg to try to warm them up - which wouldn't work - even if I was wearing heavy mittens.

I used to be a winter person. I would go out and play in the snow - ski, snow shoe, or just walk in the snow - but now I get to watch the snow fall through the window. I am more stiff and sore than usual in winter. But I can use my heating pad and electric blanket to keep me warm.

That's just one issue.

I like it when its warm out but not when its hot. If it gets too hot and humid, I need to seek refuge in air conditioning. In the awful heat and humidity (over a week of over 90 with high humidity), I was exhausted every day. In addition to amplifying pain, fibromyalgia hates heat. It will flare up. I finally got a good night's sleep after a week of exhaustion - more than usual.

I live in New England where the weather is different every second it seems. Its not necessarily a good climate for me. But I'm here and I will cope... And take advantage of the modern conveniences of AC and heat.

Monday, July 9, 2018

Chronic Illness Cost Control

I am very interested in following the new health care institution being created at Amazon, JP Morgan, and Berkshire Hathaway to deal with their combined 1.2 million employees. I think this will be a great microcosm of the US population for a new take on health insurance. 

I do not envy Atul Gawande's issues in leading this new company. However, of the top five key challenges, I am most interested in how he handles the issues relating to chronic diseases.

"Challenge: Attacking chronic disease; and variations in care
How: Leverage technology to improve patient knowledge, contract with select providers
Risk: Changing patient behavior is the hardest thing to do in health care, and may prove costly

A crucial part of Gawande’s efforts will be addressing the crushing burden of chronic disease. These preventable illnesses, such as diabetes and heart disease, dramatically magnify costs: Studies have established that 5 percent of U.S. patients account for nearly 50 percent of spending in the U.S.

“Most of those 5 percent have multiple chronic illnesses that tend to not be well-managed within our fragmented health care system,” said Dreyfus, the Blue Cross chief executive. He added that one of Gawande’s first efforts will likely be trying to understand the extent of the disease burden among the

The new venture could help improve their care and cut costs by standardizing treatment regimens and directing employees to providers with proven track records. Given the expertise of Amazon, JPMorgan and Berkshire Hathaway in analyzing data and assessing risks, Gawande will be able to use machine learning software and other technologies to better predict the onset of disease and take preventive measures.

That’s where Blumenthal sees the greatest potential for Gawanda and the new health venture — using the power of technology to help inform patients and deliver care at the time when it can make the most difference.

“The one major advantage that this combination has is Amazon and its IT capabilities and the network of consumers that Alexa touches,” he said, adding that the PillPack acquisition further enhances its ability to leverage technology.

“I would extend that well beyond the pharmaceutical market to begin to try to influence the decisions that consumers make with their clinicians about health care in a very personal way,” Blumenthal said. “That doesn’t mean changing the way providers behave so much as it means changing the way consumers behave, making them smarter purchasers.”"

I am surprised but not amazed by the statistic that says 5 percent of patients account for 50 percent of medical costs. I had more doctor appointments last year than my octogenarian parents, combined.  My mother has RA as do I. My father had pancreatic cancer and was in active treatment. But I still had more doctor visits.

I would prefer to have my care more combined and less costly for myself and my insurance companies. I also spend a lot of time and effort going to the (damn) doctor. I dislike going to the doctor, being an 'enigma' because of my multiple ailments, and end up with a couple of referrals to take care of additional issues. Even if they are all in the same medical facility, I have to wait to get into to see them. 

Each trip takes a lot of effort out of me. I have limitations on what I can do and if I could get my care more coordinated it would my life much easier. However, standardized treatment does concern me. Every patient is different and we are in the age of individualized care, not standardized. 

But I do look at this as change for the future which could have a huge impact on US medical care. I take the attitude that change is always good. Any other attitude is self defeating.

Friday, July 6, 2018

Chronic Illness Complicates Everything

As a normal person, you get something stuck up under your gum that irritates you and you can't get it out so you end up at the dentist. They get it out and you go on with your life.

I have had something stuck up under my gum line since last Friday. Its been bothering me. It has been bleeding sometimes. It is driving me crazy. Yesterday I couldn't even brush my teeth in the area because it was so sore. So I called the dentist. My regular dentist is on vacation so I got to see her partner who doesn't know me as well. No big deal.

When I got there I told the dentist about the short story that it has been bugging me since last Friday and hasn't seemed to get better, bleeding off and on, etc. He said, okay, let's take a look.

Before I would open my mouth for him to look at it, I told him about my RA, depressed immune system, and pain patch which hides all pain until it gets really bad. Then I opened my mouth. What did he say? 'It looks like a canker sore between your teeth.'

Has anyone else on the planet had a canker sore between their teeth? I don't think so. So we had a little conversation about my RA medications which sometimes cause mouth sores and how this isn't really a dental problem even though its between my teeth. He had his assistant talk to my rheumatologist's office and sent pictures of my lovely canker sore. He also prescribed an oral rinse and a topical cream to put on it. It should be better by Monday and if not see my rheumatologist. Or go see an allergist (which I don't have but probably should at this point) or a dermatologist (which I do have).

For Pete's sake, its supposed to be a minor dental problem, not a medical dilemma that requires a specialist. Who knew RA and its ensuing suppressed immune system manages to screw up everything. And aggravate the crap out of me.

In Pain

I was having a good day. But not any more. I mean I did have a good day. I did a bunch of things I wanted to do. I took it easy. I warped my...