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.

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.

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.

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.

Finding Support While Staying Home

The internet can be a very bad place to go when looking for emotional uplifts. Its full of trolls, 'fake' news, politicians, natural and human made disasters, and all sorts of other wonderful stuff that I prefer not to know about.

If you post on social media about feeling like crap you get all sorts of 'positive' replies: "I'll pray for you" (thanks but not my thing), or "you need to switch to a raw vegan diet and drink a cup of apple cider vinegar three times a day" (thanks but I eat pretty healthy and am capable of selecting my own diet), or there is a 'natural doctor in Timbuktu who cured me of my ailment and I am sure he will cure you too if you send me $1,000,000 to connect  you with him" (um, no way.). It may make you feel better but I have found I need to be a bit more selective about what I post and where.

Support groups can be wonderful things. But with a chronic illness and you are having a bad day, you aren't going to make it to a meeting. That would mean getting out of bed, putting on clothes, and getting in the car which often is a bit much.

So online it is to find support. One site I have found to be very helpful with chronic illnesses is The Mighty. It covers all sorts of fun ailments like chronic illness, cancer, disability, rare disease and another 600+ ailments and allows you submit stories, read other people's stories and its full of normal people who feel the humor and sadness of coping with ailments all the time. If you are in the chronic illness category, I highly recommend it.

If you are looking for cancer support, I suggest you go over to my breast cancer blog and look over there. But whatever you have do not skip your emotional needs. They are just as important as your physical ones.

One Of My Many Ailments: Fibromyalgia

Fibromyalgia is so much fun. I have to say its a joy to have. It makes you sweat all the time when your aren't exercising so you look like you just ran a marathon when all you did was sit on your sofa. Pain and confusion abound. And everyone reacts differently. As I said, its a joy. You get treated for pain and depression.... But there is no cure for it.

"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Note those words: 'amplifies painful sensations'. This is key to the 'joy' in fibro.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
I went through breast cancer so maybe that's my trauma - or 'significant psychological stress'.

Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

Or did fibromyalgia give me anxiety and depression - or can I blame that on my breast cancer too?

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.

Yes, I exercise. But I can only exercise every other day because I have to recover from the exercise of what I have done. Stress-reduction measures for me are reading, watching bad tv, knitting, and weaving.

Symptoms of fibromyalgia include:

• Widespread pain. The pain associated with fibromyalgia often is described as a constant dull ache that has lasted for at least three months. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
• Fatigue. People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is often disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea.
• Cognitive difficulties. A symptom commonly referred to as "fibro fog" impairs the ability to focus, pay attention and concentrate on mental tasks.

So do I have 'chemobrain' or 'fibro fog' or both? And if both, how can I form a coherent thought at all? And apnea? Got that too but I can't sleep with an f*%^$#ing mask on my face.

Fibromyalgia often co-exists with other painful conditions, such as:

• Irritable bowel syndrome
• Migraine and other types of headaches
• Interstitial cystitis or painful bladder syndrome
• Temporomandibular joint disorders

Or maybe it can coexist with rheumatoid arthritis? 

Causes: Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:

• Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
• Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
• Physical or emotional trauma. Fibromyalgia can sometimes be triggered by a physical trauma, such as a car accident. Psychological stress may also trigger the condition.

So they don't know the cause or have a cure. Nice!

Why does it hurt?; Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.

Nerves overreact to pain. How wonderful. So basically the pain is magnified.

Risk factors for fibromyalgia include: 

• Your sex. Fibromyalgia is diagnosed more often in women than in men. 
• Family history. You may be more likely to develop fibromyalgia if a relative also has the condition. 
• Other disorders. If you have osteoarthritis, rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.

So I have RA, and was diagnosed with both at the same time. So its a case of the chicken and the egg - which came first? We have no way of knowing. I also have no way of knowing which ailment is causing which pain.

Complications: The pain and lack of sleep associated with fibromyalgia can interfere with your ability to function at home or on the job. The frustration of dealing with an often-misunderstood condition also can result in depression and health-related anxiety."*

Yep. Got that ' depression and health-related anxiety'. But did they come from having cancer twice and the fear of a recurrence or as part of my RA and fibro medical crap? Or did I get a double dose because of all my ailments. 

I don't know. I just wanted to tell readers more about one of my many ailments. I will get through the other ones over time I'm sure.  Because they are what makes up with my 'chronic illness life'.

*From Mayo Clinic

Recovery Mode

Boots (the Good Cat)

I went from being pouty and whiny Friday night to being exhausted. Going back to that spoon theory thing, I used probably eight spoons at once on Saturday by getting up early, going to the beach and then for a long walk on the beach. Then we went out to lunch before coming home. I was falling asleep in the car on the way home and got in bed but didn't really nap. 

Saturday night I attempted to get a good night's sleep but Boots (our 'good' cat) woke me up at 6 am, just because he could. I also almost napped in the afternoon but didn't. Napping can be good but sometimes resting is just as good because a nap can cut into the amount of time I am able to sleep at night.

Last night, I went to bed early (no judgement please - but it was still light out) and slept 630 this morning, which was ten hours of sleep. I have a bunch of things to do today but am not rushing out of bed to do anything. I need to take it easy. My feet still hurt from walking on Saturday. I need to finish recovering from Saturday before starting my week.

If I don't finish recovering, I will be exhausted all week. I sneezed once on Saturday and woke up yesterday and today feeling sniffly. If I dont recover, I could end up with a cold, which means a week in bed, which means no fun, which means blah, blah, blah.....

Let me finish recovering and being a wimp for a few days.