In A Pouty, Whiney Mood (I'm Allowed)

I am in a pouty, whiney mood. Well, lets see. Its a bazillion degrees outside and going to stay nice and hot and humid for a week. This does not do my ailments any good.

Second, I have felt like I had something stuck in between my teeth for a day or two. It has been annoying me. And was starting to drive me crazy. So I used floss, those little brushes for between your teeth, I put a new head on my toothbrush, mouth wash, salt water rinses, (repeat all several times) and all I have done is really irritate the area and now its sore and bleeding. I have given up on it for the evening. I will deal with it tomorrow.

Next a slug killed two of my tomato plants - I got revenge on the slug by using some nasty fungicide on it. Tomorrow I need to go back and decimate the rest of his buddies. (The fungicide I use is BT based which is naturally occurring and is okay for organic gardening.)

I needed a nap this afternoon which I did not get and is contributing to how I feel. And finally, I want to get up early in the morning so we can go to the beach. I'm not good at getting up early but we want to get there before it gets too crowded - nothing like driving an hour to the beach and finding out the parking lot is closed because its full. I will definitely need a real nap tomorrow afternoon.

I'm tired, hot, mad at Evil Kitty because I had to carry him in (and he really needs a diet), and my tooth is bugging me. RA and fibromyalgia don't tolerate heat well.

I think I just need to go to bed. And sleep off my poutiness and whininess. For now. Until its return.

Spoon Theory and Life

Are you familiar with spoon theory? It sums up my life and abilities.

Yesterday I stopped by my mother's house and was looking for more paper napkins as there were none left on the table. I asked my mother if she knew where they were and she did not. Unfortunately, they have a split level so I had to check upstairs and downstairs. I went down first and then up two flights and never found them (they can use paper towels as napkins for a couple days) but that climb up two flights felt like a four spoon activity and I only had two spoons left in me. I went home and lay down until I had the energy to shower.

This is a common occurrence for me - needing to rest for basic activities. My days are short. People wonder why. But I count my spoons and rest a lot.

Bedtime

I was never the child who wanted to stay up late (unless is was the annual Miss America Pageant - don't ask, we thought it was awesome). I was happy to go home and go to bed by 9 o'clock. In college, I would stay up late, but would nap often. Also, I was so busy studying (beer) that I would not notice how late it got. Maybe I was sleep deprived for four years.

When I met my husband, I was very concerned about his sleep habits, among other things. If I married someone who wanted to stay up until midnight every night, it would not be a good relationship. I happily discovered that he is an early to bed person as well.

Now, as my body has continued to fall apart, I have problems staying up until 9pm... I used to try to stay up until sundown.... But that doesn't work.

RA causes fatigue. Fibromyalgia causes fatigue. Pain causes fatigue. Fatigue causes fatigue. Last night I was in bed at 730pm and didn't wake up until 6am. That was a whopping 10.5 hours of sleep. I needed it.

Tonight my bedtime will be around 830 probably.... but I will not put money on that.

A Pain In My Neck

In addition to all my ailments, my body likes to fall apart on me. Since the late 1980s, I have had problems with the ulnar tunnel (not carpal tunnel) in my right arm. I have to adapt to cope with it where I can't lean on it, sleep with my arm straight etc. And I have had tennis elbow twice which is a different problem but really just an aggravation.

My right elbow and hand have been bothering me recently - pain and tingling - and I have been stretching for the past few months and it hasn't helped much. I have had to cut back on the weights and exercises at the gym and spoke to the physical therapists there but it has been an increasing problem for me.

So when I was at my rheumatologist a few weeks ago, I mentioned to her that it had been acting up and she referred me to a hand surgeon to get an injection to help with the pain. When I saw her yesterday she told me:

• They don't do injections for elbow pain like mine anymore because it only seems to mask the pain.
• The pain in my elbow is the result of microtears in the tendon and I need to rest it, continue to modify my behaviors, use a wrist splint, get a special strap thingy, ice it, and be patient as it can take 2 months to 2 years to recover. (I have to talk to the physical therapist at the gym.) 
• The tingling in my hand is not related to my elbow issues. Its coming from my neck. Which is where I have a bone spur. I already had PT for this two years ago. This is a real pain in my neck. The doctor's advice is to wait and see if it resolves itself. 

Where is the good resolution I expected from my appointment yesterday? No where. It didn't happen. This is not unusual for me. I have to learn not to expect the magic wand of medical cures for me at any time.

Honestly, I think my body just likes getting revenge for all the years of torment I put it through - ice skating, skiing, hiking, roller blading, bike riding, etc. I had a lot of fun but I might have over done things from time to time. 

At Least I Know Why I Am So Tired Today

I was exhausted when I got home yesterday. I had to lie down for a couple hours and then we got Chinese food delivered so I didn't have to cook. But I know why I was so tired.

Yesterday I had to go three banks and take care of some paperwork for my father's estate. I ended up standing for a total of about 1.25 hours. That was a very bad thing to do. I should never stand for any length of time. I will make it to the gym today but definitely will take it easy. And plan a few hours lying down to recover.

One of my big weaknesses is my inability to stand for any length of time. It makes my back hurt, and the pain can be exhausting. When I go to the gym and have arm exercises to do, I often walk in circles so that I am not standing. If I walk its better. This means sometimes I can actually go for a walk - like a walk on the beach.... occasionally, and then I have to rest for a couple days but I find walking on the beach can do wonderful things for me emotionally so I find its worth it.

But that standing thing is bad. I have to stop doing that.

10,000 Daily Steps Are Not Good

I know many people and have many family members who talk about and compare how many steps they do in a day. They are some 'stupid' idea that becomes a suggestion to get otherwise health Americans off their butts and move more. I am not an otherwise healthy American and I have no desire to count steps or know how many steps I take daily.

I never got one of those 'whatchamacallits' to count my steps for several reasons - mostly I can't wear a bracelet on my left hand because of my lymphedema (courtesy of breast cancer surgery) and I can't wear a bracelet on my right hand because of my RA.

I really do not care about how many steps I take unless I take too many.

First of all, my new phone actually has an app that automatically counts how many steps I take - provided I carry my phone with me. But I rarely carry my phone with me so I usually get totals of 1700 steps total for a day - my brother says he takes that many steps before he leaves for work. If I go to the gym, I bike for an hour but my back is nicely supported and it doesn't take too much out of me.

My doctors and I have a deal. I go to the gym three times a week and do my hour of cardio, nicely supported, followed by 45 minutes of stretching, range of motion work, and weights. Then I don't need to do much else. I do go out and garden at this time of year. Other times of year, I do try to get out and move around but not as much.

No, 10,000 daily steps won't help me get in shape or lose weight. What 10,000 daily steps means to me is: I did too much. That means I will need to spend a day or two recovering and taking it easy. So I don't really care about them.

To the People Who Don't Get It

If someone you know has a chronic illness, you should take a minute to walk in their shoes. First of all:

• They are not able to rest today so they can do something exciting tomorrow. They are going to rest today and then again tomorrow because that is what they need to do.
• They are not going to get a miracle cure at their next doctor appointment (that is why it is called 'chronic'). Its a lifelong struggle.
• Their chronic ailments complicate everything - from grocery shopping, laundry, leaving the house, to medical tests and procedures, sitting, standing, walking, and lying down. 
• They are not contagious (most of the time) so don't avoid or shun them.
• They are human beings and should not be written off. They still want to see and hear from people. They still want to do things. But maybe just at a slower rate or for a shorter period of time.

How would you be doing if all of a sudden you were living in a lot of pain and could never get comfortable, never mind sleep well? Or became dependent on multiple medications to be able to function as a semi normal human being? Or had to plan every second of your life to allow for rest between trips to the grocery store and the library? Or spent more time home alone because you were not able to go out and do things?

Think about it. And then call someone who has a chronic illness and just say 'hello'.

My Life Has Changed

I used to blog all the time at Caroline's Breast Cancer Blog. I started it in 2007 when I was diagnosed with breast cancer. It helped me retain my sanity by blogging through cancer treatment - I got to vent about the ups and downs of cancer treatment.

Since then, my body has completely rebelled and I have accumulated multiple chronic ailments. I live a completely different life than I did 11 years ago. Now I feel like I just go to the doctor and the gym to help retain whatever health pieces I may still have.

I decided I need a new blog to write about my life because breast cancer is no longer the focus of my life. For the last few years I have felt I was straying from breast cancer, which was the title of my blog, when I did not write about life with breast cancer. Yes, I survived lived through breast cancer but its no the focus of my life so here I am at a new blog - Life with Chronic Illnesses - because that's what my life is all about.