Showing posts from September, 2011

Maybe some Answers?

Last week I had that appointment with the Nurse Practitioner who came highly recommended by a good friend of mine. She listened, we talked. She gave me lots of questionaires to fill out, about different body systems. She asked questions and found things I did not even consider important or worth reporting on. She was thorough.

And I'll see her again for follow up and bloodwork results in a few weeks.

Meanwhile, she wanted me to do one thing: Go on a gluten free/casein free diet. Because, she said, I have all the symptoms of "leaky gut", and gut health is the bedrock of one's health. That...and there's lots of other things wrong that will get ferreted out. But for now, GFCF and we'll wait on the blood test results for seeing how messed up my hormones are.

Ok...I can do that. I assured her I was familiar with GFCF, having cooked for my daughter who tried that way of eating once before.

So, on week ago was my first full day of GF…

Baby Steps Towards Plain: Inspiration from a Desert Monk

A desert monk was summoned to Alexandria one day by his bishop. As he entered the city, he saw a prostitute, and he started to weep. "Why are you weeping, Abba?" his disciples asked him. "Because," he replied, "I am afraid for the soul of this young woman. And I am also weeping because she takes more time and effort to be attractive to men than I do to acquire the grace of God."

This is a story that Father Alexis told in his homily this morning, and although I cannot remember the name of the dessert monk in this story, I content really struck me. "...more time and effort to be attractive...than to acquire the grace of God."

And that is what I want to write about today. I think having a "plain" heart, means that this be NOT the case. And then I thought of "Seek ye first the Kingdom of God and His righteousness and all these things shall be added unto you." "All these things" here is clothes, and th…

Baby Steps Towards Plain: Definitions

One of the things keeping me from jumping whole hog into wearing "plain" clothes is that "plain" as traditionally defined by the religious groups that practice it, is almost "costumey". One of the motivations is that they be "distinctive from the world".

However, in my little project, I need to find a happy medium. What does "plain" mean for me in my more urban context (people do dress differently here than they do in small town USA)?

I came across a wonderful definition of clothing versus costume that I want to share: Costume could be anything we're wearing that is about deliberately projecting an image that's not aligned with our spirit & environment.And in thinking about all of this, the other thing that comes to mind is that it's more about what's in my heart than what's on my body, although I believe that the outside will reflect the inside.

So my baby steps towards plain are going to involve …

How it Went

SO....I had that appointment today and I really really liked my care giver. She's a nurse practitioner who is very very well informed and takes a holistic approach to her health care-giving. I filled out tons for forms and surveys for her, and my scores showed that I, for one thing, have an inflamed and leaky gut. We talked for a long time. Additionally, my scores on other forms I filled out show that most likely my thyroid, but also all my other hormones are a hot mess!

She was so well informed, listened to my concerns and was on the same page about lots of things: approves of raw milk drinking (although now I get to stick with raw goats milk), wants me to drink Kombucha and be on a gluten free/casein free diet. For starters. I'm seeing lots of bone broth in my future, I think. I've never been off dairy before, so that should be interesting. And I'll have to brush up on my gfcf knowledge base. Its been a few years since one of my kids tried that diet. The da…

Health Care Stuff

It's all I ever blog about, isn't it. I'm sick...blah blah blah...I feel lousy...yadayadayada....

I DO pray, you know. Lots of "Lord Jesus Christ Son of God, have mercy on me a sinners" happening around here. Especially while I'm crying in bed at night because I can't get to sleep. Yes, I am very aware that I write depressed person's blog.

So, today is the big day. In about ten minutes I'm off to see a new health care professional and hopefully get some treatment that will ACTUALLY HELP ME, rather than the smarmy "you are fine" garbage I usually get.

This appointment feels like I'm going to a job interview. I feel like I have to go in there and prove that I am "worthy" of treatment. I pray to God this care provider will treat me clinically, and not based on my blood work. Because I am the person who had a negative pregnancy blood test WHILE I WAS PREGNANT. Yes. I did. Blood tests can lie.

Or maybe God wil…

Baby Steps Towards Plain

Plain dressing has, for years, fascinated me. I think Quakers who are plain, the Amish, the Mennonites, Monastics, are all so beautiful in their way. What attracts me to their way of dress is the simplicity and the plain-ness. Now, without being a part of a community that has such a uniform, dressing in such a manner would almost be presumptuous, like going around dressing like a Pirate all the time would be presumptuous. It would be dressing in a costume.

My long time readers will remember that I did a project two years ago, in the autumn, where wore the same two identical brown dresses for a month. It was an exploration of simplicity. It was a fast of sorts. It was a way for me to confront my own accquisitivenes and my own vanity. It is time for me to do another such project.

This time, I am calling the project "Baby Steps Towards Plain". The parameters and the goal of my project will be a little bit different, and I have not thought completely of all that it will …

National Chronic Invisible Illness Week: "You Just Don't Get It"

Tonight I went to an American Heritage Girls meeting with two of my girls. Last year I was an assistant leader, but this year I'm just being a mom in the group. I'll still be "helping out" with the older girls, as needed, but I'm not "official". Everyone knows I've had mono and that it's been hard to recover. People are very kind and understanding and solicitous about the fibromyalgia, too.

So, there's this one nice person there, who was describing her day tomorrow...or some Saturday...that family is always on the run, and she described ACTIVITIES from morning until night that she would literally be running from one thing to the next. Her family has four kids, I think. Baseball, Volleyball, this that and the other...I could not keep track. But her description was literally from about 8 in the morning until ten at night...

And I said "Wow, I don't know how you do it!" And she looked at me and said "Well, you do it too…

In Honor of National Chronic Invisible Illness Week: 30 Things Meme

1. The illnesses I live with are Fibromyalgia/Chronic Fatigue Syndrome and Mononucleosis and Hypoglycemia

2. I was diagnosed with it in the year: 2004

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is not being able to be as "involved" in helping other people or being at Church as I'd like.

5. Most people assume that I will eventually get better.

6. The hardest part about mornings are waking up in feeling very sluggish with no "get up and go" and having to eat food I don't care for very much in order to take care of my health. 

7. My favorite medical TV shows are the one's that are love ER or Trauma shows.  I used to love Dr. House until he started fornicating with his boss and that ruined the show and I stopped watching it.

8. A gadget I couldn’t live without is my comfy chair!

9. The hardest part about nights is trying to get to sleep and then trying to stay asleep. 

10. Each day I take about 5 pills & vitamins. That'…

Homeschooling with Chronic Illness

Homeschooling with a chronic illness is more about what don't do, than what I do, do.

I sit in a chair and we read together. ...and then they go off and do the rest of their schoolwork.

We don't go on many field trips....

We don't belong to any homeschooling co-ops...

We don't have the kids in any sports (because mama's too tired and ill to drive during the kiddie sports happy hour time of day)...

Dad helps out with taking them to scouting activities when I am too sick. Dad takes them door to door for fundraisers. (Mom sews the badges onto their vests. )

And my oldest DOES do volunteer work at the local Public Library a couple of times a week.

We don't have warm cozy friendships where we get together with lifelong friends on a regular least not since we moved.

But we DO learn sacrificial LOVE together, in the context of our various illnesses. And we DO go to Church, and we DO pray together.

National Invisible Chronic Illness Week: How my Illness Affects my life in Church

I found out just now that someone out there has decided that this week is "National Invisible Chronic Illness  Awareness Week".  At my house, every week is invisible illness week.

So, I decided to use my blog to participate in raising awareness.  I'll try to blog something more than once this week.  If possible, every day.

Today I am going to write about how my invisible illness (fibromyalgia with the bonus feature of mono this year) affects my participation in my Church.

It's hard.  Writing this makes me sad.

We moved to this community three years ago, and I hardly know most of the people at Church.  We go to a large parish, and it's been really really difficult for our family to integrate into the community, and a LARGE part of that difficulty has been due to my invisible illness.  The rest of it is due to my children's  and husband's autism issues, which has its own host of fun stuff, MANY of which overlap with mine.  

I get invitations to all sorts…

Labor Day

Today is labor day! My plans: I'm going to sew, and get as much as I can done on this one cassok job that has been giving me nothing but stress since the day I got it. I've had a hard time focusing on numbers and such lately and the job is pretty much a design job which I WAY underbid...sigh. I have to make so many customizations on the pattern that I just don't feel like doing....I need to get my brain in gear for it and "git er done" as we say here in Kentucky. The reason I'm pushing myself to sew is that I've been feeling pretty sick lately and that's not going to go away anytime soon. I want to get out from under my current pile-o-jobs and then stop sewing for a while. Heartbreaking, isn't it? But with the mono and the fibro and all that, I've gotten myself into such a BAD PLACE, physically, that I need to put myself on some sort of regimen to rebuild my fitness and my health. And that includes exercise and rest. And in order…

Alone in the Struggle: Dark Night of the Soul

Insert blog post about me feeling sick and tired and in pain from fibro. Insert blog post about me feeling overwhelmed. Same song, eightysevenththousandths verse. Could get better, but it's gonna get the old song goes.

That's why I have not been blogging lately. I don't want to complain and it's been a season, a YEAR really, of going deep within and seeing the blackness and feeling the desperation of not really belonging anywhere except perhaps to a little cyber community of likeminded and like-illed persons.

And the darkness is black enough for me to really have to struggle to see the people in my life who DO care about me, and who DO love me, to really see that they do.

I don't know that it's depression so much as me struggling against a fleshly response to being chronically ill. Its hard, you know, when nobody outside your family realizes how sick you are and have been for a long long time. I wear that mask, the happy face when I'm…