#87 - Parenting with Lupus: Summer Time with Little Bear

Little Bear is home with mefull-time this summer, with the exception of one day per week in which he visits his Grandparents.

This is our first summer like this since he was one.

My poor health interferred with my ability to tend to Little Bear full-time.

This year, healthwise, a great deal has actually gotten better. After the years of waiting for diagnosis and now three years under the treament of a really good rheumatologist... we finally have returniong some semblance of normalcy in the Cozy Cottage.

I hired someone to come in and clean for me twice a month. I also hired someone to do the yard work so that Hubby could get some kind of break. This is not a luxury for us... I never realized how badly I needed the help with the chores.

Now that Ms. T. comes in to help, I am able to tend to the smaller things in our home. I don't waste days of energy on the heavy duty chores, that means more energy for my little guy.

This year is easier also, because Little Bear is now 7 and is more independent. He is coping better now too.

We went into family counsleing for brief therapy last autumn and that really did the trick. The psychologist did not really need to work much with Little Bear more than to focus on the barriers the lupus (and grief) had created in my parenting abilities.

So this summer is the challenge of finding fun things for Bear to do without causing a flare for Mommy.

Here are some things we have tried thus far that have been a big hit:

1. The Carol Duvall show on HGTV. This cable craft show is so much fun to watch with Little Bear. It is broadcast in the mornings here, so we watch this while I wait for my joints and brain to switch into gear. Children tend to imitate what they see on t.v. Might as well use that to your advantage. Little Bear likes to "demonstrate" his crafting ideas via this show's format.

Here's a link:
Carol Duvall Show - Crafts : Show : Home & Garden Television


2. Paint with water. I can not sit in the sun outside, so I have Little Bear play in front of the picture window facing out to our yard. A plastic cup of water and some old craft paintbrushes go a long way for entertainment. Bear likes to paint the wood on his club house and the sidewalk pavement.

3. Coffee filter flowers: Just take some coffee filters, tidbits (yarn, string, beads, seeds), something to color with and glue. We experiemented with glueing flowers onto construction paper, hanging them on strings, and even a pretend lampshade.

4. Painting... this is a messy one and not good for a fatigue day. But... Little Bear can spend hours and hours painting. I allow him to use my acrylics with supervision. You have to make sure your child is able to keep their hands out of their mouths, noses, whatevers... and to not be too messy. Just lay a garbage bag on the floor under the work area, and tape brown paper bags or another garbage bag to the work surface.

Let your child have fun painting different surfaces. Rocks work really well, and old bits of wood. Wal-Mart has cheap and cheerful little plaster figurines that kids may enjoy decorating.

You can also use markers in place of paint.

5. Coffee filter skeeball. This one was Bear's idea. He used the remaining coffee filters and wrote scores in the middle of each coffe filter. Laying them on the floor in a skeeball pattern, he bounced a soft ball off of the closet door and scored points for the balls that landed in the coffee filter.

6. Coldwater Creek catalog paper dolls. Little Bear came up with this one too. Coldwater Creek catalogs do not use models for their clothes... which makes for EXCELLENT paper doll stuff. Bear cut out items for hours and made his own store.

Here's a link to request a catalog:

Coldwater Creek: Catalog Request

7. Make your own board game. Use a large sheet of construction paper, freezer paper, paper bags, or tape several pieces of paper together. Just draw a plain path and see what your child comes up with. This one is loads of fun and you get to play with it too!

8. Bubbles. Thank you God for bubbles. If you don't have the store bought type, jusrt ppour some dishwashing soap and water into a cup and use a twist tie (or anything you can come up with) for the wand.

And that's it for this morning.

Happy parenting!

:)

#86 - Online Lupus & MCTD Support

Here is an excellent resource to finding the emotional support we all need with iother people who truly understand what you are going through:


Lupus and Mixed Connective Tissue Disorders - Index

Keep an eye out later this month for an interview with, Kathy, the talent behind this wonderful site.

#83 - Phone Call From the Rheumy

I got a phone call about one week ago from my rheumatologist.

My insurance company turned down the first request for the clinical trial chemo.

No surprise there.

My doctor told me he has already sent articles to the insurance company to show the efficacy of lupus treatment, thus far, through these clinical trials.

That was tagged with the statement that if this doesn't work out, the FDA will probably approve this drug for treatment in a couple of years.

Woohoo.

I feel greedy.

I want to be better NOW... not in a couple of years.

I worry what waiting a few more years may do. Some of the fdamage from the lupus... can it be reversed when you go into remission?

Making myself miserable over all of this.

It's the letdown after having some hope that there is an end in sight.

This is the second clinical trial letdown for me.

I do not feel like trying for a third.

This is too gosh darn depressing.

I have been feeling like a blackhole of misery lately.

I am having more trouble with carrying on a simple conversation. I get frustrated because I look like I am not paying attention, or I can not articulate my thoughts.

I prefer to be alone, because then I do not have to struggle with the demands of communicating.

And after just writing the above...

that is not completely true.

Little Bear is home with me now full-time. School is officially out after a half day tomorrow. I enjoy being home with him and having his little friends playing here at the Cozy Cottage.

It's grown-ups that expect more from you conversationally.

And now I am rambling...

Other news...

My Mom (age 80) has not been feeling well.

Please pray for her.

One of my sisters was diagnosed with lymphoma on Tuesday.

Please prayer for her.

#82 - Radio Broadcast - Some Things Will Never Be the Same

Here is the link to my listener commentary for WBFO radio (local National Public Radio affiliate):

wbfo NewsRoom


(if above link does not work try this one:

http://www.publicbroadcasting.net/wbfo/news.newsmain?action=article&ARTICLE_ID=927555 )

#81 - Anxiety and Current Events - On the Air 6/13/06

Revised edition of this essay will be broadcast on National Public Radio Station (88.7 FM):

http://www.wbfo.org/

On Tuesday, June 13th at 6:30 am and 8:30 am.

Listeners in the Western New York and Southern Ontario region will be able to hear the broadcast.

I will provide a link to the online version and podcast when it is available.

#79 - Rituximab

I went to my rheumatologist last Tuesday.

Treatment is at a standstill.

Hubby came with, which I prefer, in order to offer his observations on how Ms. Lupus has been behaving and also as a second memory during doctor's visits in case I forget something said or recommended.

Cognitively, I am off, and I have been for a very long time. It doesn't show up on the MRIs I have had in the past. The migraines are practically daily and they are often debilitating.

The most frustrating symptom is that I am not who I used to be.

Before the lupus crash I had a mind that was sharp as a tack.

Very sharp.

God put a racehorse in between my ears, and until a few years ago, that racehorse was running full steam ahead.

So I have lost a lot cognitively.

My husband can see this when others can not.

My racehorse is running, but now more like a family pet instead of the runner it used to be.

People who do not spend much time with me would probably never notice. I am able to compensate a lot for the cognitive losses because of what I had before the lupus tap danced on my brain.

This is not sleep deprivation.

This is not depression.

This is not middle age or the little moments of forgetfulness that occur when we are distracted.


This is something intangible and difficult to observe except for my husband and son.

They get it.

There are times when I can not talk. I just can't put two words together to make sense.

When I am in a situation that requires conversational interactions, very quickly I disintegrate into the attention span of a two year old on a rampage.

People probably think I am terribly rude and a horrible listener.

I wasn't like this before.

Anyway, Hubby was able to explain this to my rheumatologist last week.

And we asked again about trying to get me into a clinical trial with Rituximab.

My rheumy is going to push hard to see if I can get in.

I am at a great disadvantage because I have a more "controversial" form of lupus. It is called ANA negative lupus. The medical experts can not agree on ANA negative folks as having lupus status or not. Only 5% of us diagnosed with lupus are ANA negative.

Figures I would have to go about having lupus the hard way.

I know I am fortunate for having a rheumatologist who really knows what he is doing.

Here's how clinical trial research works.

They want to test the most common form of the disease first.

They want those people with lupus who fit the majority of those diagnosed.

So I do not know how this is going to play out.

I have a postive skin biopsy consistent with systemic lupus. That skin band test is considered 98% accurate. You can not get any more accurate than that in this kind of medical testing. To the best of my understanding that is a more efficient indicator of lupus than the ANA blood test.

I have to go back to the neurologist.

I hate going to the neurologist.

Some of my most unpleasant and invalidating experiences while being pushed through the lupus diagnosis treadmill occurred at the hands of some thoughtless professionals in the neurology field.

I fired the last guy.

You know you can do that.

They do work for you no matter how pompous some doctors may behave.

Okay, it is a luxury where I live, because there are more choices.

I have a new neurologist, but it is exhausting to establish a new working relationship with yet another doctor.

This new guy doesn't know me. He has no history with me as I have progressed through this mess.

So I dread the rehashing of symptoms and hearing the same innane questions that they all have to ask you before you get treated with any respect.

Gosh.

I just had an "AHA!" moment.

This must be how my former counseling clients felt when they came in to see me after being treated by a kerjillion other counsleors.

Now I think I get it.

Thanks Ms. Lupus for another lesson.

Getting back to the whole Rituximab thing.

Because of the cognitive problems I continually am battling, my rheumy may be able to state my case to the research team.

I may not get pain relief from this treatment, but I have said this countless times...

I can live with the pain.

It's not the pain that gets you in the end with lupus.

It is the unpredictability.

It is not knowing from one hour to the next if you are even going to be able to go to the store, or even your own front yard. It is bloody impossible to plan anything with other people.

It is the loss of quality of life issues.

Like planning your day around maybe, just maybe, having enough energy to push the vacuum across the living room rug.

And the cognitive changes.

Hubby was in tears when the rheumy stated he will try hard to get me into this clinical trial.

Hubby misses the "old Loretta".

I do too.

But, I will never be the "old Loretta" even if I get all my thinking back.

Something in my life just snapped and changed me forever.

You can't go backwards on that.

But, still in all...

It would be nice to read books together again, and talk through the whole evening, and make music together, and trust me to go in the kitchen and not burn down the house...

you know little things we can take for granted.

I would like to drive a car.

I would like to talk on the phone more.

I would like to write more.

I would like to be more involved in the lives of those I love without disintegrating fifteen minutes into having a conversation.

Gosh, I am whining.

I am totally lacking any perspective today.

I have a loving family, a home, food, clothing, friends, and heck...

this blog...

and a computer to write on...

and millions of other little luxuries that are so easy to take for granted.

Living with lupus involves the daily task of mastering your feelings over knowing what you have lost.

That is really hard.

I know what I have lost.

And yet, I live a life that millions and millions of people all over the world could scracely dream of.

So I feel greedy and hungry.

Greedy for wanting more and more, to squeeze everything I can out of this life.

And hungry for what I have lost.

I feel conflicted.

And there is this faint hope that this cancer drug, this Rituximab, may be a bridge to help me cross over to something more than what I have right now today with this lupus.




Read more about Rituximab here:

Cancer drug shows promise against lupus