Mama Sick

This week was our county’s fair and I really wanted to take Tyler, even though I would have to contend with the pain in my calves and flaring Costochondritis.  I just wanted to do something normal with my little boy!

I tried to take a nap before I had to get ready but spent most of it scared I would be a complete mess there.  We hadn’t made any plans for a wheelchair and I hadn’t been using my cane because of my arm and chest pain.  I got out of bed feeling nauseous and in pain, but I took my pain meds and got in to the shower.  I took my cane.  I figured Grant and Francesca could always leave me sitting somewhere, I just wanted Tyler to have fun.

Well, I kept up with everyone!  I did have pain but I kind of ignored it because Tyler was enjoying his first fair so much.  The first thing he did was won himself a little baseball and bat “going fishing”.  He went on a flying dragon ride and at first he was like What the heck have I gotten myself into? but then he was smiling at the end.  He went from not eating something that resembled something you stuff in your ears (cotton candy!) to demanding a bite of Francesca’s candy apple!

He enjoyed seeing all of the animals and at the end of the day got very brave and went on the giant slide with Grant!  He was begging us to ride the big swinging ship but I don’t even think they would have let such a little guy on!

We only stayed about two and a half hours but for me to walk around that much is huge! Could my PT already be helping?  I came home and had a massage I had scheduled to try to calm down the Costo so I am feeling pretty good.  I guess we will see about tomorrow, but I am really glad I was able to do what I did today!

And I have to admit to give my child a great time when we have been doing nothing the last three weekends felt pretty good!

I have often described myself as an old car.  You fix one thing on me and another thing breaks down. And so it goes.  My first couple of sessions with my new physical therapist have gone well. But due to situations beyond my control it has been necessary for me to do more inside and outside the home and this has exacerbated my Costochondritis, which was started now a month ago when I attempted to play with my son in the pool.

At present, at 2:30 a.m., I am sitting with a heating pad wrapped around my boobs.  If you have never suffered from Costo, it is a delightful, unique experience in whatever group of ribs it happens to be in.  If it is in the lower ribs you may feel like you have stomach problems, closer to your lungs and you have trouble breathing, and if it’s by your heart, you feel like you are having a heart attack. It is often misdiagnosed as bronchitis or muscle strain.  Some only have it once in their lives, others never get rid of it.

The fact that I am on pain meds for my legs and I can still feel it flaring through is worrisome to me.  Ideally, the best thing for Costo would be to rest the ribs, but since breathing is necessary, and so is having to move about in life,  it can be a long healing process.  I have had it for about 15 years and have gone in and out of flares.

It’s one of those conditions that really freak you out because of the breathing and heart thing. It’s not so great if you have an active toddler that still wants to be picked up.

Here we are, about to go into another weekend and I feel like this!  I am going to ask my PT what he thinks.  Could the therapy possibly be making this worse?  If so, I think I am going to have to put it on hold.

Usually caffeine has been known to be a trigger for me.  I have been off my lifeblood coffee for two weeks and it is still getting worse.  I miss my coffee.  I miss any sense of feeling decent.  I have long since forgotten what it is like to have “a good day”.  I’ll stop the pity party now.

Grant grew up with fish and little frogs all of his life so last week, Tyler for the first time got to pick out pets of his own.  Deciding on Betta fish due to their reputation for heartiness, Grant took Tyler to the pet store and Tyler chose a red Betta and a blue Betta.  As pets go, fish are relatively easy on the budget and we got a really neat fish tank which gives the illusion that the fish are together but are acutally split.  Male Bettas are known to fight.

It’s a nice way for Tyler to develop a sense of responsibility and caring for animals.  With Grant or I, he feeds them twice a day and says Good morning, How was your day, and Goodnight to them.

As for their names?  I reminded Tyler of the beloved Dr. Seuss book and said that Red Fish and Blue Fish are perfectly good names!

Weekends and summers can be so hard for the chronically ill, especially if you’re a woman. Every Sunday night I thank God I made it through another weekend and on Monday morning I feel like the walking (laying) dead!  It’s the same for so many women whom I know who are sick.  Sick or not, it seems to be the natural order of things that laundry, dishes and other household affairs fall on the woman.  Our children seem to want us too, over anyone else.

I know I am not alone in this so I write for those I know too.  For the woman who is sick and has a five-month-old and is upset that other people are taking care of her child more than she is.  For the woman with Fibromyalgia who adopted a child from China and then got sick, who sometimes thinks maybe her daughter would have been better off with someone else?   And for the woman who has Lupus who’s been forbidden to go out in the heat and sun and wonders, What am I going to do with my children all summer long?

It still amazes me that despite my struggles, I am still my son’s #1.  This weekend was particularly hard after a rough week for me.  We didn’t get out yesterday and then today was a complete rainy washout.  Tonight as I rocked my son I asked him, “Did you have a good weekend?” “Yeah!” I had tears in my eyes as I said, “I’m glad honey, you’re a lot of fun to be with.”  “You’re fun too!”

So I know it to be true, and I write it for those who need to see it, and also for me who needs to repeat it over and over.  My son still loves me, even though I am sick.

For the past two weeks, Grant has been complaining of abdominal pain on and off, some of it bad enough to go to the E.R., which I have just told him GO, GO, GO!  Don’t wait for a doctor’s appointment, then weeks to see a specialist with the pain you are having!  He does have Crohn’s Disease.  Stubborn male, as soon as the pain would go away he would say It’s better now, see?  The last two weekends have been harder on me too, because I feel like a single parent, and a sick one at that without Grant’s help.  I feel like my arms are and chest are never going to heal if they keep getting exacerbated.

I hope I don’t sound selfish.  It’s also about the quality of Tyler’s weekends.  I don’t want to spend the day wondering if Grant will go to the E.R., and overly-exhausted because he is laying around all day.  Plus just because Grant is sick doesn’t mean that suddenly I am not.

So today, Grant completely forgot that he had already taken his medications and took a double dose!  I went out to do the chores that Grant could not do and he called me.  He had called for an ambulance.  He was vomiting and so dizzy that he could only crawl.  So that’s what got him to the E.R.  Francesca is able to stay with Tyler and I and Grant is staying in the hospital overnight for observation.  At least now they will be able to see what’s wrong with his stomach, besides an accidental overdose.

Although I am annoyed for all of his stubbornness I do still miss him.  It’s hard when your spouse is in the hospital and you’ve got a little one at home.  You want to follow the ambulance, you want to be there.  But unless it’s really serious, I have to be with Tyler.  It’s like, Have a nice hospital stay, I love you.  I think this is Grant’s fifth or sixth trip to the E.R. since Tyler has been born.

A husband and wife, both chronically ill, both disabled, what are the odds?  When’s Good Morning America coming to our house?

Well I am cautiously optimistic that I may have finally found a good physical therapist!  As opposed to that other loser last month!  He spent over an hour examining me, finding the various points where I say OW!  Should I be flattered that he said he has never seen a patient with my complaints before? The good news is he thinks that he can help me.  He understands Fibromyalgia and does Myofascial Release therapy!

He said that one of my hips was rotated one way, the other another, which can put everything off.  I have been ignoring my Piraformis Syndrome (yes, I know there are a lot of hyperlinks here but think how much you are learning if you click on them!) because the pain has not been as bad as that in my calves but he said it all relates.  His plan is to do myofascial release on all of these spots. He tried a bit yesterday and I already felt some relief which was so great!

I know it’s too early to really say, but for the first time in almost a year I feel some hope and happiness again with my health!  The pain in my calves has been what has really made me lose my independence and not be able to be alone out with Tyler.  And chronic pain = chronic fatigue.

I see him again on Monday and then we start a twice a week.

Back to Lupus maintenance tomorrow.  Orencia Infusion.

Kids say the darndest things!  Here’s some of the things mine comes up with!

On the differences between men and women:

Tyler was watching Grant “pee” standing up.

Tyler:   Daddy, is that your penis?!

Grant:  Yes.

Tyler:  It’s big!

Grant:  Go tell Mommy that.

Another day.

Tyler:  Mommy, do you have a big vagina?

Mama Sick:  Uh, no.

Which gets me to thinking, why do men want big penises, but women and vaginas, not so much?

In the kitchen with Tyler:

We had taken out from Subway and I had some extra napkins from there which I gave to Tyler at dinner time.

Tyler:  Oooo, we got new napkins???

On How He Got Here:

I always call Tyler “My boy” or “My baby”.  One day Grant called him “My boy”.

Tyler:  No Daddy, I’m Mommy’s boy.

Mama Sick:  Honey, you are Mommy’s boy and Daddy’s boy.

Grant:  Yes, we both made you.

Tyler:  You drew me??

Can’t wait until he reaches age three!

Today I went to the dentist for the first time in two years.  Between having no dental insurance and having so many illnesses, my teeth weren’t ranking high, although I know how important it is. But for a month or so my teeth were kind of always bothering me, not major pain, but a dull ache all of the time.  I knew something was wrong, I knew at the very least my teeth were sensitive along the gumline.

I had a coupon, “New patient exam $195, X-rays and cleaning included.”  I was a bit leery of these types of ads, and of the neon sign saying “Dentist” in the window but everything looked pretty normal when I walked in.  It was a nice office and the staff seemed happy, that’s always a good sign.

So I had some good news and bad news from the dentist, who seemed very trustworthy.  The good news is that I have the teeth bone structure of an 18-year-old.  The bad news is that all of my filings, ALL TWELVE, need to be re-done.  I haven’t had cavities in probably 20 years, so my filings, silver, were very old and were decaying.  Oh, and I did have one cavity.  The dentist said this wasn’t bad, it is just the normal progression of filings in your mouth and things could be a lot worse.

Things got a lot worse when I heard the price tag, almost $3,000!  Um, should I say there was more good news when I was approved for some kind of dental credit card, interest-free, that I must pay every month for the next 18 months of my life??

Big sigh.  What can I do, right, don’t have it done and just let things get worse in my mouth, and even more expensive?  It is what it is.  I could make it cheaper by having silver filings again, but with all the knowledge we have about mercury in silver filings…I don’t know, I have enough problems already.  And, um, I’m hoping to live for a while longer so I don’t need any more silver filings.

The dentist is going to do it in two visits with novacaine.  I go back August 5th.  I literally just sighed again.

We all know that not all women bloggers made it to BlogHer this year, obviously they are more of us at home than in Chicago.  Probably the biggest reasons that a woman who wanted to go but couldn’t are financial, or their responsibilities at work conflicted, or they couldn’t leave their children.  Maybe some are single moms without a decent support system, maybe some have a special needs child and they don’t feel comfortable leaving their child for a few days, ever.

I think about all of those woman who couldn’t be at BlogHer’09, but I also think about the people like me who couldn’t go because they are chronically ill.  Even though money is tighter than tight for us, I know my husband would have told me to go to BlogHer because he knows how much that means to me, how happy it would have made me.  But on July 24, 2009, I cannot stand for long periods of time or walk more than a short distance, and the doctors still don’t know why, more than six months later.  I am still hurting from playing with my son in the pool two weeks ago.  My biceps are still sore, my Costochondritis is flaring and my Rheumatoid Arthritis if flaring a bit too.  On July 24, 2009, I am in chronic pain.  I wouldn’t want to be at BlogHer because I would be too exhausted and in too much pain.  I would need someone to push me in a wheelchair all of the time.

Forget about me.  When the location of BlogHer’09 was announced, I spoke about it with a friend of mine who lives in New York.  Chicago was too far and we were both too sick to go.  “We’ll go next year, together!”, she said.  On July 24, 2009, she is sicker than when she said that to me.  She has had Lupus for about 15 years, and her disease is much more advanced than mine.  Ironically, the location of BlogHer’10 has already been announced and it is New York.

When you have chronic illness you don’t know how you will be doing tomorrow, much less a year from now.  You could be doing better, you could be doing worse.  My friend and I are just two of the many women bloggers with Lupus, Rheumatoid Arthritis, Fibromyalgia, Cancer, etc., etc. who don’t know how we will be doing next year.  Who fight ever day with their illness to just be able to post on their blog, to be mothers to their children, to overcome financial hardship, to just get through the day.

There were those women, who, when the 2010 conference was announced today, bought their ticket. And then there are those women who have chronic illness.  Where will any of us be on August 6th, 2010?  I hope for the best for us all, especially for my friend, but none of us can really say.

If you are at BlogHer this weekend, thank God or whatever Higher Power you believe in that you are healthy enough to be there.  I ask you to just take a moment to think about those who can’t and to maybe think about ways you can help them.  Maybe just start by getting the word out about your sisters who wanted to be there but just couldn’t.

…at New Jersey Moms Blog today.  Please check it out for my take on “putting a leash” on your child!