Saturday, October 9, 2004

Lupus and Vaccines

Today is going to be blood test Saturday.               
Bloodwork is one of the many fun activities someone with lupus can do on a pretty regular basis. I actually had Buffy the Vampire Slayer at my front door this morning ... 
a tad confused by the tubes and vials of blood that I have been surrendering up to the great phlebotomist powers that be.

lame joke... 

Actually, I don't mind going for labwork again this morning. I have to go into town because the other labs are closed. I have been cooped up this week and in spite of the fatigue factor... 
I need an outing.

I have to be tested to see if I have ever had chickenpox.
I came from a huge family and my very elderly mom can't remember if I ever had the chickenpox.
And why is this important?
Well, here is the scoop.
I get a call last week from the School Nurse. Little Bear is missing a vaccination for the chickenpox. He has to have this in order to stay in school.
So Hubby takes Little Bear this past Wednesday evening for the shot. 
Nope... no can do. 
Because Mommy has a suppressed immune system (thanks to the Imuran). Chickenpox is a "live" vaccine. No one is sure if Mommy has any defenses against the very slim possibility of picking up the chicken pox from Bear.
I will go in today to have this bloodwork done to see if I have any immunity for the chicken pox. If not, I am going to have to practice special precautions with my little boy for 10 days.

Isn't lupus fun?

You know what bothers me the most about this?
That my little boy has to WAIT to get the things he needs to be healthy.

All because of me.

That is one of the things I struggle with regularly with having lupus.
And, please do not interpret this as complaining...
I am just stating the facts of my family's existence since lupus has moved in to our little family.
While we were waiting for Little Bear's adoption 
(a 9 month process...uncanny isn't it?)...
like any mother, I had all these fantasies about stuff I would be doing with my precious little boy.
Long days playing at the beach, picnics in the sun, playing all day long at our town park, long stroller walks through the neighborhood, and road trips all over the country to visit family and share our joy.

Letting go of the fantasies and embracing what is reality is a daily exercise.
But, I don't see that as any different than any other parent.
We imagine our life with our babies, and as our child's personality blossoms, and as the roller coaster of life takes us for a ride every parent has to learn to surrender in order to give our children the space to grow.

I learn to change the way we talk about plans.

For example, we had been talking about going to the movies in the village last night.
I told Bear "If Mommy is up to an outing this Friday, we will go to the movie. But, Bear, if not Friday...we will go sometime this weekend."

I could not get to the movies last night. After my last entry and a bit of e-mail correspondence I slept most of the day.
Not lazy... just the fatigue warning that comes before a flare.
Doctor told me to REST when I get like this.
Bear has some friends gathering today for playtime at the park. I would love to go, but with going to the lab this morning and hoping to save up enough energy for the movies...
Hubby is going to be the kiddy escort.

You learn to delegate your old responsibilities.
You learn how to create a support network.
We have been really fortunate to have reliable and loving neighbors. The older kids next door and their mom are always eager to help us with Little Bear.
They come over and entertain him on days when I am fatigued really bad. They have already offered to drive me anywhere if I am stuck for a ride. They are working on baking me a cake this weekend...which choked me up when I first found out about this little plan.

I never expected help like this from the neighborhood... 
I really didn't...
 but, that is where a tremendous amount of our support is coming from.
 And now that Little Bear is in a small Catholic school... I get a call from his teacher the other day. We talk and she lets me know that if Little Bear needs to stay home with me on a school day "just because" that the school has no problem whatsoever with that. Sometimes Bear gets anxious  and justs needs to stay home and be reassured that Mommy is there for him no matter what.

 And they already are doing what they can as a  community to watch over Little Bear and make him feel welcome.

Bear comes home everyday informing me he has 12 NEW friends! (his classmates).

Now getting back to the vaccines. The only reason I even brought up the topic is because these are the little things that people without lupus are probably completely unaware of. The health of my family members has direct impact on my health status... just as my health status impacts every corner of our family life.
The task I am working hard at right now is to make sure that the lupus doesn't interfere and that life can be as normal as possible for my guys.

I know that I am very blessed that Hubby and I are able to talk very openly. We have a strong emotionally intimate relationship... so we can talk about what adjustments need to be made to accommodate.
Right now we are puzzling over a way to get a dishwasher that will fit into out tiny kitchen (more like a kitchenette).Dishes are a real chore around here because I can't hold my hands for long at the angle required to wash. And Hubby works so darn hard all the time... I absolutely can not stand seeing him washing dishes. A dishwasher would empower me by helping me feel better about keeping the Cottage cozy and I would feel better knowing that Hubby isn't doing the dishes. And, of course, this would relieve Hubby from an extra chore.

I know from hearing from so many with lupus, that Hubby and I are living in the exceptional situation. I know that.

And I wonder how to help those with lupus who are having such a hard time communicating with family. I also know that some people with lupus suffer terrible rejection from their family members who refuse to accept that the lupus is real. (Denial is the first stage of grief.)

That is where building up a support network is imperative to emotional survival. 
Some people find their support outside the family... and that is just reality.

Here is a place to visit to be able to share with others who know what you are going through:

 General Discussion SEE POSTSCIPT BELOW!

This is the AOL LUPUS Message Board.

I would stongly urge those of you who feel like you have been exiled to a desert island... 
You never need to suffer alone.
Isolation feeds the depression and anxiety that accompany lupus.
There are several options...
 you have to find what will work for you. LICENSED qualified counselors can help you find the resources you need and build up your emotional strengths.
A support group will help you make new friendships with people who are really walking the journey with you.
Many people find support in their church communities, and I know some do not.
Some kind of community connection can help.
If you are really stuck... 
call your rheumatologist's office (or whichever specialist you are using) and ask them what is available.
And, of course, you can try the AOL Lupus Support network. This is where I have found a lot of support.
Don't forget that as you find the support you need, you will find intense emotional healing when you begin to be able to give back.
Those of you who have contacted me probably do not realize what a GIFT you are giving when you invite me to offer support to you.
I thank you for that.

And now I better get going here.
I have an appointment with Count Dracula.

POSTSCRIPT: November 2011: AOL eventually shut down its support board. We now have an online presence at Facebook. Please join us! You can find us all here:

Bloom Where You Are Planted

This group has been set up to provide a place on Facebook for people living with chronic disabling illness, those waiting to be diagnosed, and our caregivers to visit in order to receive and give support to each other in a compassionate setting.

When life has stopped you in your tracks, and you no longer may go in the direction you had wanted to go... plant your roots deep and strong where you now must rest and BLOOM WHERE YOU ARE PLANTED.


thebaabee said...

What a gift I have given you...........You don't realize what a gift you have given me.  And, as far as Count Dracula......... Have fun there.  How well I know him.  Love you dearly my friend........Lu

klconard1 said...

Loretta dear, I am praying you have immunity to chicken pox already but that if not, the Lord will help you get safely through Little Bear's immunization!
Hey as far as I know they still make portable dishwashers-- on wheels!
loving you

tdain2003 said...

((((Loretta)))) It is sometimes so hard to wait and be patient, especially when we're concerned for our children.  I have a question though.... I thought the chickenpox vaccine was optional?  It wasn't available for my oldest son but my youngest had it.... and guess what?  He still got chickenpox AND our Dr. informed us that because he had a mild case, he can still get it again!  grrrrr.  So, I pray that you've had chickenpox so whether he ends up with mild case at some point, you won't be affected at all.  I've look forward to your entries daily.  And I saw Lu's comment....glad she is out of the hospital!  


wsm311 said...

I've never had chicken pox. When my daughter was little I TRIED to get them from her, but didn't. Now that I'm on 80 mg/day of prednisone would not be a good time! I think the biggest reason I keep needing blood transfusions is because they take so much blood out of me for tests! ;-p I hope you are doing OK today.