Sunday, August 23, 2009

I've decided I just might make it

Gosh, this past month has been the biggest downer I have experienced in years. Typically I can juggles nine or ten things at once and still feel like I am accomplishing something. This past month has just been draining and to make it more exasperating....I haven't even done that much.
Occasionally I will have a day or two of fatigue that (let's face it everyone) all of us as parents experience. But this was a wall that I hit and I could not get myself back up. I had a friend tell me one day to "drink a Red Bull" and I would be fine. I have had those moments too and after some tea or even a Red Bull I have been fine. But this was different.......
However, long boring story about fatigue, malaise, and not knowing what in the hell is wrong with you aside.....
on Thursday night all of a sudden I felt back to normal. This occurred about 11 PM after one of the worst days I think I have ever had. And the good news is that I feel about 80% back to normal.
In fact today we had a great day. One birthday party, one sleepover with my two nieces and all of my brood, and I even got to get out with friends to attend a Ladies Social for the Cancer Society.
I felt so good that I came home from this event, put four kids to bed, and started working on a pile of papers that had stacked up on me this past month. I even felt good enough to sit down at this laptop and rename this blog. Something a little more like my usual attitude to life and not the downtrodden, apathetic attitude I have carried around 90% of the time for the past month.
I have to say "autism wise" I feel like we have gotten back on the right track with working toward a good base plan with Packy's bio-medical and we have been tight on the gluten free diet. Home school has been going great, even in the midst of my lassitude.
I am working on some goal setting and hope to get some posts back on here with some great information on autism and homeschooling: both two topics very near and dear to me.
I feel so much better.
If your feeling the same way as you are up reading blogs tonight please know that it too will pass. I have been working on some biomedical for myself and plan on sharing details for other parents in upcoming blogs.
We are taking all four to a family reunion tomorrow so wish us much luck.

Thursday, August 13, 2009

The IVIG experience from h**l

I am almost too wiped out to write this and tell the story like it should be told. I would have cried yesterday out of sheer exhaustion but I decided that since Patrick was the one going through the pain and stress of the experience physically that it would be selfish of me to be the one crying.
Our IVIG experience actually started last week. Our IVIG med was actually sent to the wrong address and ended up at another patient's address. Just an honest mistake from someone who was printing the shipping label at the doctor office.
Our appointment was postponed from last Thursday to yesterday, Wednesday. Patrick was excited about a "trip" in "mama's car" and was so thrilled to get in with a few of his new books.
He got his IV about 1:50 PM yesterday. Typically the IVIG lasts about roughly four hours.
At first the pump that I rent for the IV procedure would not work. We tried the cord where we could plug it into an electrical source but even though we got a green light on the cord, the actual machine would not start.
A friend of the doctors who was also receiving an iv, called one of his employees to bring us batteries because the batteries that came with the machine were dead. We finally got it working and started the iv.
To make a long story short, it plugged up five times. The dr had to flush it out four times and by roughly 8 PM that night when she needed to re-do the entire IV and insert it into his other hand, Patrick just freaked out. He had to be sedated with a shot of versed. He resisted the shot like you cannot imagine and then fought the effects of it.
Finally we had to quit the procedure at 9:30 PM and he still had not actually gotten his full dose of his IVIG. We had an over two hour drive back home.
I felt so terrible for Patrick. He was such a trooper. We saw the tubing was blocking because the medication was crystallizing. We were supposed to get a new batch of the IVIG but now we are wondering if we were sent the old batch. It is supposed to be kept cold and has a short shelf life. Everyone we speak to has never seen normal IVIG crystallize in the tubing like that.
It has just been exhausting. We got lost when we left the Dr office because the GPS could not find the satellite. It was frustrating with the state I was already in. We got home close to 1 AM.
Patrick was whimpering and exhausted, running a low grade fever.
What a heck of a day. You know, we love our children with all our hearts, I am sure you can relate.....we do anything we can for them. It is torture when you can't explain these problems to the kids.
I started out the day so optimistic. Just Patrick and I....bonding...on our trip together....getting his treatment. Then it all just derailed.
I can't imagine how he will act next time he has to have an IV. He was very distressed. We are still exhausted and distressed almost 24 hours later.
There is much more that I want to add but I am too exhausted right now to put more thought into this.
Bottom line...our kids are hero's for what they go through.

Wednesday, August 12, 2009

Driven? How about Desperate, Tired or Worn Out?

Oh gosh. Where do I start this morning? It is 6 AM and I am preparing to drive Patrick to Nashville for his fourth IVIG treatment.
I have neglected my blogging (the one that I have had the best intentions in the world of maintaining). I am not sure what to call it....PMS that never left all month long or this severe fatigue that has kept me grouchy and incapable of getting much done.
Not one to typically feel down and I have never thought of myself as a moody person but something has got to give here.
A group of "autism" moms in my area got together for pictures a few weeks ago and one of the mothers coordinated the photo shoot and even t-shirts where we each got to choose a word to describe our battle with autism.
I chose the word "Driven" because typically that word would describe me well in life, autism, and basically any pursuit that I chose to put my mind too. By the time the day of the shoot arrived...I felt anything but driven. Other words fluttered around my mind.....Worn Out, Tired, Fatigue, etc. You get the picture.
I am sure many of you reading this are thinking "what the heck, lady, I have felt like that for years." Which, believe me, I know we are all tired and we all have days where we want to bury our heads in the sand.
However, this is just not me. My fatigue and grouchiness are getting so severe that it is EMBARRASSING! I don't mind to snap at anyone and I don't mind to say just exactly what I am thinking....that is where it gets scary. HA. I have spent the last four years running around telling people to get healthy, work out, stay in shape and conquer life.
Now I just want to put my head in the sand, and maybe not come back out.
On the up side, I am working to find out why I feel this way and am working to get better. I am currently too tired to even do my daily workouts. I am working with my doctor to see if my hormone levels have dropped and also am wondering if it isn't a recurrence of Epstein Barr which my entire family has had at one point. Many of the chronic fatigue books I read point everything back in the direction.
We have a funny little joke in our family. Well, not really funny, and not really a joke, but I think many of you reading this will relate. My husband and parents can all tell you where they were the day Kennedy was shot, all of us probably remember what we were doing the morning of 9-11, and I can vividly remember the two weeks my husband and I laid in bed with our initial exposure to Epstein Barr. Our son Patrick was about two months old and I am also guessing this was the time he was exposed to it as well. We laid in bed all afternoon and would just stare at each other. We weren't sleepy...just couldn't get up. We had a sitter watching our one year old and our new baby, she would stay until 4 PM. I remember we would look at the clock and just dread 4 PM because we were both too chronically exhausted to get up, cook, play with the kids, etc.
I read a lot of books about how once you have that virus it stays with you forever and you keep having little occurrences of it. The more I read the more this all starts to make sense to me. My father has chronic fatigue and RA. Both most likely caused by chemical exposure some years ago. There are times that I have a fatigue flare up so bad that I wonder if I am being hit with RA and maybe I will never feel better? I panic for a few days wondering if it is all downhill from here? But then typically things ease up and I feel better. This is very descriptive of Epstein Barr.'s column has bounced around quite a bit, not sure if everyone got the gist of it that I am tired. HA. Not too tired for this lovely humour so please forgive me.
Maybe God has given me these bad days so I can learn to appreciate and cherish the good ones.