I Hate It When I Do Stupid Things

Everyone does stupid things. I think I do the dumbest stupid things. Which seems to inevitably  to slowing me down for periods of time.

This morning I performed stellar acrobatics and completed a triple lutz followed by a quadruple axel. No actually, I was admiring a beautiful piece of wood and my bifocals allowed me not to be able to see the edge of the red stained chairs. The result is I went down three steps and landed on my newly-operated-on-knee, elbow, and transformed a pair of capris into a pair of shorts (hemming now required). It doesn't help that my other knee doesn't have an ACL and likes to give way - which I think it did duirng this spectacle.

I told the shop owner that I would not sue and I also would not inform my orthopedic surgeon. He also gave me some ice.

I came home and put ice on my knee and lay down for a while. But my knee and elbow are definitely sore. That means I get to sit down on my butt for a few days and be lazy (lazier than normal). I tried walking around a bit on my knee and it is weight bearing but it is definitely sore and requires more ice and elevation. I hope to rest for a couple of days and then go back to the store, return the ice pack, and finally get a good look at the amazing hand crafted furniture.

My husband gave me a hard time about how I can't be trusted to go anywhere. sometimes I think he might be right. (No, I didn't say he was right, I said sometimes he might be right.) There is a difference.

The real thing is most people do stupid things but I am more 'fragile' than everyone else and its really hard to limp on bth knees.....

But I really hate it when I do stupid things.

Recovering

Today is Monday. On Saturday, I probably know I did too much. Sunday I was tired and lay down for two hours in the afternoon. Last night I slept for 12 hours. I will attempt to pretend to be normal today but who knows how I will feel.

One of the many wondrous things about me and my health is that even if I do something bad (meaning over doing things) one day, it doesn't mean I can recover in one day. Its often a couple of days to recover.

I have plans for today and hope to make it through them. Especially since my 88 year old mother will be with us and I should think I have more energy than her. Life isn't fair sometimes.

Beware the Horoscope

I don't usually believe my horoscope. I don't read it very much either. Sometimes I take a glance at it as I go through the paper. But today's horoscope I saw and read it and am concerned:

"You could feel out of sorts. Generally, the month before your birthday you might feel a little down. Often people look at their past year and wonder whether their next year could be as meaningful or better. Today's eclipse could cause fatigue. Tonight: Know when to say "no.""

And I am concerned: 'Today's eclipse could cause fatigue.'

Yesterday I was so tired I skipped my knitting group and didn't leave the house really. I took a nap too. If I am more tired tonight than I was last night I could be in trouble here. 

I think I need to stop reading my horoscope because I could get fatigued.

Planning Through My Life

My life is very structured. I never just drop anything and go do something else. Why? Because I have everything planned. There is only so much I can do in a day - which is about a tenth of what a normal person can do.

In the big picture, I go to the gym three days a week. The gym is near the hospital which contains my doctors. All doctor appointments are scheduled on gym days. The gym is also near my hair dresser and manicurist. Again, those appointments are scheduled on gym days. And no gym day can contain more than one thing plus the gym because I can't.

On the days I don't go to the gym, I do things that go in directions that are not near the gym. Again, I only do two things in one day. Thursdays I go to my knitting group and then I might do one other thing.

My husband claims I should only do one thing each day. Personally I think I can do two things. And it depends on how you count things. Somethings don't count. If I go to the gym and then stop at the library for ten minutes, I call that one thing. I left the house and came back once. Will I go back out again? Maybe, maybe not. But I probably will cook dinner too. That's my second thing. Some days I am too tired to cook dinner.

I plan what I want to do. Some days I can't even do what is planned. Those days I rest so I can pretend I will move my plans until the next day. Sometimes my plans go up in smoke and never happen. On the 'up' side, I get to watch my fair share of 'quality' TV on Lifetime, HGTV, Food Network, Animal Planet, and more.

As my health has tanked, my spontaneity has evaporated. So I plan and pretend I am doing everything I want in life. But we all know that is not the case.

Coping

Sometimes people say to me 'I don't know how you do it' meaning 'how do I live with dilapidated body'. (I prefer dilapidated to defective, damaged, or other terms.) Well, sometimes I don't know  how I do it either. But I do k now somethings.

Life with chronic illness is not something done alone.

• I have a team of doctors. All my doctors are at the same hospital so they can talk to me and about me. I appreciate it when they do ask questions of each other about my conditions because my medical history is complicated and involves several specialists.
• I have a 'team' of friends who try to understand my ailments as much as I try to understand theirs. If you don't have ailments, you don't get my life. (I do have friends who are healthy but they do not always understand.) These are the people you call when the doctor says 'but we need more tests to see what is going on here' or 'here's another sucky diagnosis'. Together we can figure out how significant the new issue is. There's nothing like having a friend on the other end of the phone who is googling away to help interpret the latest news.
• I have a 'team' of online resources. These range from specific websites to secret groups on Facebook where we can share our ailments without being found by family members before we are ready to share or just to b*tch about the latest news. One website for chronic illnesses I have found which is awesome for me is The Mighty. This is my current favorite. There are others for when my mood changes.

My point is I could not cope with this alone. I need emotional support to deal with this. I also know my emotional side is just as important as my physical side. Physical issues result in emotional issues such as anxiety, depression, stress, and more. I know I have to treat both so as not to implode. 

Yes there are days when I wake up and wonder how will I cope today. But I have learned to reach out. I have learned to say no. I have learned to be proactive in my care to speak up or take a day or afternoon for myself - the proverbial 'mental health' day to give myself a break. 

This is how I cope. 

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.

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.

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.

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.