Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Saturday, April 01, 2006

Saturday Thoughts

Pearls and Dreams

It's Saturday afternoon. A lazy day today. I slept in, and in stark contrast to last weekend ... I don't have a lot that I have to do other than some preparations for surgery on Tuesday. Making sure I have enough laundry clean to get me through till ..whenever.

Over the last several weeks, my brain had been going full force with idea's. It does that occassionally. I get a burst of energy ... and I start to wonder ... if I could find a way to take care of the insurance part of the medical care of being on disability ... could I get off of it?

I convince myself, that I am only on it because I need the medical care and medication coverage. Since I am on 17 medications, and several of them cost several hundred each ...it becomes overwhelming without help. Quickly.

So, there I am, in March, convinced my reason for being on disability is that I am in need of the medical coverage. I am going full speed ahead ... taking care of my family, volunteering at my church. Writing stuff trying to get stuff ready to sell to publications, and writing materials for my women's sunday school class.

I show up at the church several days a week ... and do stuff there ... as well as taking off for a full day conference out of town ...then spend the next day at church running around like a chicken with it's head cut off. Monday is followed by a meeting with our associate pastor.

I came home from the meeting with the pastor, and ... crashed. I went to sleep ... I got up Tuesday and went to my rheumatologist appointment, and spent some time on line ... and the rest, laying down. I went Wednesday to my orthopedics office for my pre op, and to the hospital for pre registration ... I did my normal wednesday stuff at church ... and I was dragging the whole time.

Thursday, I slept in ... and wound up taking a nap in the evening. Friday, I slept in. I went to lunch with my husband ... and came home and took a nap, and then spent some time on line, and then took another nap. Today, I slept in till 1 pm!!! It is now 3 pm and I'm wishing I'd never gotten up.

My body is dragging. It is due in part to the amount of pain from lack of anti inflammatories. It is mostly due to the fact that I keep trying to pretend that I have a normal body, that I can keep up with my healthy friends. I go and I go and I go and I CRASH.

This month, my doctor ran an ANA, anti DNA and other such lovely tests on me ... they were stable. The lupus feels like it's worsening and I keep having flares. Horrible flares. That keep making them increase my prednisone. So, when I asked the rheumatologist about it Tuesday he said "Sounds to me like a behavioral issue."

It's not that they want me to lay around and act like a sickly person ... THEY DON'T ... they just would prefer some balance to my life ... some reality checks that don't come in the form of a flare or a crash because I've pretended that I'm normal and I can keep up with everyone else. I can't. Pure and simple.

Normal, healthy people don't take 17 medications. Normal healthy people don't fall for no reason.
Normal healthy people don't have 15 doctors.
Normal healthy people don't crash for 10 days because of 4 days of busyness.

I have got to find a way to keep a lifestyle that keeps my brain active and happy ... and yet allows my body to get the rest it needs. It's not fair to my family to have me crashing every 3 to 5 weeks like this. (yep, it's that often, and the recovery time is 10 days to 2 weeks ..do the math)

Surely there is a way to do what I feel I need to do, want to do, and yet, get the rest I need daily, so that I don't crash every few weeks ?????


  1. All I can do is tell you I know how you feel about what you are going through. I have some (maybe many) of the same issues as you. I try to act like nothing is wrong and then I realize there is plenty wrong but people just don't get it!

    You already know from reading some of the things I have written that I have lived in denial for over 20 years with the severity of my arthritis. It has caught up with me and I so hate it! A big problem is I did such a good job of hiding it from my family that now they wonder why I seem to be sick so much, when I wasn't before..Ohhh, if they only knew how bad I felt before they would most likely understand it better now.

    I am on needles and pins while I wait to go back to CCF in May. I had all that blood work done that they requested when I was there on the 17th. and they called me yesterday (Friday) and said he wanted repeats on some of the tests..I don't know know what that means. Were they so HIGH that he wants them double checked? All these questions and no answers.

    You have to just take it easy the next few days until your surgery. You don't want to go into it in a frazzled state and already worn out.

    You know that you can't go off disability with the amt. of medications you are on and the many specialists you have to see.

    Please take care and rest up..It will soon be over and then you will start back up on your anti-inflammatories, and be able to cope much better!


  2. I must admit that I cannot fully appreciate your medical condition or your difficulties. *sorry*

    From that point of view, I am of no help to you whatsoever... I can pray for you though.

    So, with that in mind, I am looking at your situation from a totally different aspect and was wondering if the following suggestion would be feasible and possibly help?

    You need to develop a strict schedule and adhere to it.

    You need to schedule x hours for church/volunteer work on x days. No more, no less.

    You need to schedule x hours on x days for house things. Schedule ONE thing for that day. Do not clean the whole house in one day. Only do one section, or one thing, on any given day.

    When you cook, make enough for two to three meals. (Spaghetti sauce freezes quite well and so do a lot of other things.) You could actually schedule a 'cooking day'.

    You need to schedule x hours on x days for all the repetitive details and responsibilities that you have.

    Write out a schedule. Follow it 'religiously'.

    Do not vary from the schedule at all.

    Leave plenty of room for daily rest/naps.

    Leave plenty of room for unexpected events.

    And do not fill these blank spaces of 'time' with *stuff*.

    Would this work for you?

    I developed this kind of thing for myself when I had 15 children to take care of in my home.


  3. I have a simpler system:

    First, do what you want to do.

    If there's energy left over, do what you absolutely need to do.

    That way, your needs are met. Because, if you don't take care of yourself, you can't take care of the rest.

    Just a thought.

  4. Aw hang in there Pk. I hope for the best with your surgery Tuesday. You'll be in my thoughts and prayers. Take Care.