For some one that is short on time and occasionally short on kitchen skills, it sure took me a long time to dig around on the internet to find pre-packaged--frozen--ready made meals. But yesterday, as I was sitting down cleaning out a big pile of "to do" things, I found an email address I had saved for the Gluten Free Mall.
And $137 later, we are going to try out two brands of chicken nuggets, lasagna, fish sticks, carrot cake, brownies, and many other types of frozen items. I was shopping like mad going through those web pages yesterday.....finally "Schwan's" for my son who is on the GF/CF diet.
I made a promise to myself a long time ago that if I could find GF/CF foods that were good, easy to prepare, and types that my kids love like lasagna, brownies, and nuggets that we all might start on the GF/CF diet. I don't think it would hurt any of our household to eat this way. Sure, some of you who live where I do, might be thinking that we do have a store or two that carries these similar frozen items, but either the brand hasn't been one that my son would eat or it was simple math. Simple math meaning that a small serving of brownies for about ten or eleven dollars does not equal something that I want to buy a couple of times per week. HA. :)
I will keep everyone updated on how quickly these purchases arrive and how my kids enjoy eating them.
Totally Random thoughts on various topics. Author has had many life experiences in various areas. No telling what you will get today.
Sunday, December 13, 2009
Saturday, December 12, 2009
Kuddos to a fellow spectrum family
I just have to start this out with a great big compliment to my friend, Heidi. She is the mom of a wonderful little boy who is on the spectrum. We sometimes have a lot of negative stories on our blogs because life can just be tough sometimes but this is so awesome I had to share it. She and her son are both performing in a local play. I am so sad because we cannot get tickets...the play is sold out for the entire run! Which is fabulous. I just think that speaks volumes to what great parenting does for our kids. She has a fabulous son and I just think it is wonderful that they get this great opportunity to be in this play together.
As for our household, it has been pretty good. We took two of the kids to a family wedding in Texas. Packy stayed home with his grammy; his little brother stayed also. I think that has probably upset his schedule a little bit because he has been pretty stimmy. He keeps running that low grade fever which I have a feeling is part of the strep infection......(refer back to a prior column on PANDAS). He is doing his 8th IVIG on January 5th. I think the IVIG has really helped him in addition to the vancomycin and the arithromycin. Right now, he is not taking anything other than some Motrin to keep the fever knocked down. We are hypothesizing that the low grade fever probably has a headache along with it. He has had some acting out the last couple of days...some yelling, some silly talking etc. After the Motrin he settles down, all the yelling, silly movie talking stops.
Patrick has a great behavior therapist, Ms. Joni, who is integral in his home schooling. I posted a photo of her with the kids. The other photo shows the kids all dressed up for a party and play that she worked with them on. She helped them make costumes for a Thanksgiving play and they wrote out parts. The kids even used props they found around the house. It was a very impressive little show! :)
We hit another milestone in November, the day after Patrick's 7th birthday, my husband and I celebrated our Ten year wedding anniversary. Not that we haven't had our rough moments, we hit a really bad spot about two years ago, but it seems like the last while has been really good. We laughed and said that celebrating ten years is like the "new silver" anniversary. HA. I think we have finally gotten to a good place with working out our parenting and understanding what both of us can and cannot contribute.
The most important thing is that we have a happy family and I think that from the smiles on the four kids faces that we are accomplishing that. My prayer this Christmas season is that all families who are dealing with autism issues will have peace and that someone, somewhere can find some answers to the myraid questions involving this epidemic.
Sunday, December 6, 2009
One Happy Little Guy
Patrick has really enjoyed spending some time riding the horses. Things are still going really well for him. We had an IVIG two weeks ago and he is doing great. He is a little stimmy but I have a feeling that we are needing some Diflucan for him. We have had some really great moments this fall.
Pleassse....don't get me wrong.....we still have major struggles with autism and all the adjoining issues but overall, we have had some great things going on.
We have been very strict on his gluten free diet in addition to making sure he gets his HBOT therapy in (which we are still working on getting him in there more). I have to say that I feel he is healthier than he has ever been. I would attribute that to the IVIG...he has had seven now.
I hit a few rough spots as a parent where I let myself feel down. I wasn't sure if I was doing the right things to help Packy. I questioned the biomedical we were doing and thought maybe we had hit this plateau that we couldn't seem to rise above.
However, I feel good in knowing that it was just a speed bump and that I was right to hang in there. It gets hard at times, but it sure is worth it. Every time I look at the smile on Patrick's face or he says "I love you mama" then I know that everything we do biomedically is worth it.
Friday, November 13, 2009
PANDAS....a very interesting angle to pursue
Wow..I just finished a book called Saving Sammy by Beth Allison Maloney. What a wonderful book. I just joined her fan page on facebook. She is the national spokesperson for the PANDAS Foundation. I am highly impressed by her book and the journey that she and her three boys went on for several years of their life.
Patrick's doctor gave me a verbal diagnosis of PANDAS about seven months ago right before we started the IVIG. I feel like we have really found a link to explore with PANDAS and after reading Beth's book it really shed light on so many symptoms and issues involved with strep infections and PANDAS. I also firmly believe that not only Group A but also Group B strep is involved in these infections.
It was really exciting to read this book. I highly recommend it to all parents who have children on the spectrum.
Overall, we have had a typical week. He was up last night and couldn't sleep very well but is really seeking me out for attention. Which is always a great thing!
I will share more PANDAS information as I do a little more research. I knew that the IVIG would help treat it but there is so much more to the whole issue. Patrick has his 7th IVIG this week in Nashville so be sure to keep him in your prayers.
Tuesday, November 10, 2009
Seeing Gains in Language
We have seen some great language gains lately with Patrick.
He will be completing his Seventh IVIG treatment next week in Nashville with Paige Adams. He started using the HBOT again and we are getting in a consistent regiment. I also used Nov 1 as the date for really making sure that everyone who is with him was making sure that his GF/CF was really tightened up with no slip-ups.
I have to credit these bio-medical interventions for his gains in unprompted language. He also appears to have better cognition too. I inserted a photo from Halloween (he is the little fireman) and he was so excited the week before Halloween! He kept asking me about "trick or treat." He has never shown an interest in this before.
Last night, he told his sister and I that Angel (a german shepherd we have) is "Packy's dog" and "first dog" which he eventually put together as "Packy's first dog." When I asked him "who is Packy's first dog?" he promptly told me "Angel."
The only thing about this that didn't excite me is that Angel is for sale as a therapy dog. :) Her mother is our long time therapy dog so I started getting him to name and talk about some of our other dogs. But we shall see. :) Anything for our kids, ya know?
Saturday, November 7, 2009
Our "Autism" Life
When I first found out Patrick had autism....or actually, way before I found out officially, I became the queen of Internet research. I looked up everything possible, had large notebooks running with strange diagrams and charts drawn that only I could understand. I bought books from Amazon by the large box full. I read and watched...learned, sought out information, learned some more.
Some where around Year 4 into the learning experience, I became burnt out. Wasn't sure if what I was doing was the right thing to do or where Patrick was really at in his program. It has taken me a couple of years to get over this burn out.
Hopefully I have shaken it off. I just got some great new books in the mail, am following some great Twitters on autism, and basically researching new things and keeping my eyes and heart open for the rainbows and forgetting about the storm clouds.
We are back to looking into Stem Cell therapy either in Costa Rica or Germany. We are also tough on our diet and recommitting to some serious time in the HBOT. Patrick also started massage therapy two weeks ago and I can already see some positive benefits from it.
My greatest hope for Patrick is to be a happy and healthy little boy. I feel like the health is such a big improvement already...so many gut issues are finally cleared up after years and I feel like treating the PANDAS has and is continuing to make such a huge difference.
As we look into Stem Cells and other options I will continue to keep everyone posted.
He attended his sisters 8 year old birthday party a few weeks ago and got to roller skate for the first time. He did so great too!!! I just had to include this photo.
Friday, September 25, 2009
What a wonderful day....so much to appreciate!
I know that so many of us "warrior moms" sometimes feel great after we can vent after a particularly stressful day....and I think that is for all moms who have a hectic day or week. However, I have made a commitment to myself to be sure to write down the good days and positively vent about the great times as well.
My four children played so well with each other tonight that I told my husband I was afraid our real children had been kidnapped by aliens! LOL.
They were all so sweet and so good. I love it when they play together. It is so fulfilling to hear my daughter playing "mom" to them and even funnier when I hear them using my "lines." I love it when they really are good about playing with Patrick and including him too.
Tonight all three boys are "camping" out in their bedroom floor tonight. It feels great to see that.
My wish is that for my other dedicated mom and dad friends out there to have a peace filled night.
I know we get down at times, but we have to make the memories of all the good days be a big BOOST for us!
Wednesday, September 23, 2009
Have it all? Who wants it all? I'll just take a large portion of some of it...the best parts.
HI all,
Gosh I feel so much better as I blog tonight. I have two or three in the "edit" and "saved" area regarding vaccinations etc that I vented on but need to edit before I post them. Luckily this email is a little more positive.
I know that homeschooling is not for everyone. Don't get me wrong, I realize that some people have a work schedule or other responsibilities that just don't allow for it.
However, I just wanted to offer a positive word on it to anyone that is interested. I home school four children. A 4,5,6,and 7 year old. Yes, some days I do feel like I have lost my mind.
However, bear this in mind, I don't have to deal with teachers, with policies that I don't agree with, and I don't spend any time, energy, or money fighting the school system regarding special education with my son. When I hear the horror stories that others struggle with I am so glad that I made this decision.
It is so much easier than I ever thought. But it is the most fulfilling and wonderful thing that I have decided to do next to actually having the children. :)
I am also feeling much better thanks to Dr Paige Adams helping me decipher some of my lab reports and working on balancing out some issues. When I see what my son Patrick goes through with his biomedical issues caused by vaccinations and what my father goes through with his RA and chronic fatigue due to chemical overexposure to uranium hexafluoride, I am just so sad but so determined to get everyone feeling better.
I also really prioritized my life. Or should I say re prioritized. No more chairing events, no more club meetings, no more anything that requires my regular attendance right now that doesn't involve my kids. I might occasionally do something for a charity fundraiser or for fun for myself but I am so burnt out on so many of the things I have been involved with.
I had created a motivational program called "Yes You Can" and it revolved around trying to accomplish everything humanly possible. It was very popular. I was paid a lot of money to present it to people...mainly by the companies they worked for.
I threw every bit of it away and deleted everything off my computer.
Who in the world wants to achieve everything?
You can have it all? Who wants it all?
I decided that was about the stupidest thing I could try to teach anyone.
I just want what is good and important to me....and I don't think you can really teach that.
Sorry for the rambling. I plan on doing some more in depth posts on home schooling and the different things we do.
Gosh I feel so much better as I blog tonight. I have two or three in the "edit" and "saved" area regarding vaccinations etc that I vented on but need to edit before I post them. Luckily this email is a little more positive.
I know that homeschooling is not for everyone. Don't get me wrong, I realize that some people have a work schedule or other responsibilities that just don't allow for it.
However, I just wanted to offer a positive word on it to anyone that is interested. I home school four children. A 4,5,6,and 7 year old. Yes, some days I do feel like I have lost my mind.
However, bear this in mind, I don't have to deal with teachers, with policies that I don't agree with, and I don't spend any time, energy, or money fighting the school system regarding special education with my son. When I hear the horror stories that others struggle with I am so glad that I made this decision.
It is so much easier than I ever thought. But it is the most fulfilling and wonderful thing that I have decided to do next to actually having the children. :)
I am also feeling much better thanks to Dr Paige Adams helping me decipher some of my lab reports and working on balancing out some issues. When I see what my son Patrick goes through with his biomedical issues caused by vaccinations and what my father goes through with his RA and chronic fatigue due to chemical overexposure to uranium hexafluoride, I am just so sad but so determined to get everyone feeling better.
I also really prioritized my life. Or should I say re prioritized. No more chairing events, no more club meetings, no more anything that requires my regular attendance right now that doesn't involve my kids. I might occasionally do something for a charity fundraiser or for fun for myself but I am so burnt out on so many of the things I have been involved with.
I had created a motivational program called "Yes You Can" and it revolved around trying to accomplish everything humanly possible. It was very popular. I was paid a lot of money to present it to people...mainly by the companies they worked for.
I threw every bit of it away and deleted everything off my computer.
Who in the world wants to achieve everything?
You can have it all? Who wants it all?
I decided that was about the stupidest thing I could try to teach anyone.
I just want what is good and important to me....and I don't think you can really teach that.
Sorry for the rambling. I plan on doing some more in depth posts on home schooling and the different things we do.
Monday, September 7, 2009
We survived the aiport
Well this last round of IVIG went much better. Patrick did great at the doctors office but when I say we survived the airport, I should say "we barely survived the airport."
Patrick was so very stimmy that the airport completely over excited him. Landing in Orlando had him saying "Disney, beach" over and over.
The real kicker came when we went down to the ground transportation area where he spotted the Disney bus he rode in last spring. We provided some real entertainment for the rest of the customers in the car rental line with us. We even had people letting us go first...you know that things are bad when others let you go before them in today's society.
The trip was overall very taxing. A definite bright spot was that he did so well at the doctors office and the other bright spot is what a helper his seven year old sister can be to me. She was great for helping out in the airport and helping in the hotel.
I know these types of moments are the ones that make our family bond stronger and yes, makes me a better person. But sometimes it is tough.
I watched a documentary the other night about a lady who had adopted around fifteen or so children with a mental or physical challenges. It made me realize that life with autism might not be a path that I would have knowingly chosen but I sure know that things could be much much worse for our family. I have the utmost respect for all other parents out there who know what it is like to be in the trenches fighting alongside their child.
Patrick was so very stimmy that the airport completely over excited him. Landing in Orlando had him saying "Disney, beach" over and over.
The real kicker came when we went down to the ground transportation area where he spotted the Disney bus he rode in last spring. We provided some real entertainment for the rest of the customers in the car rental line with us. We even had people letting us go first...you know that things are bad when others let you go before them in today's society.
The trip was overall very taxing. A definite bright spot was that he did so well at the doctors office and the other bright spot is what a helper his seven year old sister can be to me. She was great for helping out in the airport and helping in the hotel.
I know these types of moments are the ones that make our family bond stronger and yes, makes me a better person. But sometimes it is tough.
I watched a documentary the other night about a lady who had adopted around fifteen or so children with a mental or physical challenges. It made me realize that life with autism might not be a path that I would have knowingly chosen but I sure know that things could be much much worse for our family. I have the utmost respect for all other parents out there who know what it is like to be in the trenches fighting alongside their child.
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.
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.
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.
Well....today'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.
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.
Well....today'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.
Tuesday, July 7, 2009
Autism...just one of many facets of our family
There is a point when you realize that it all has been worth it.
I walked out to the van this morning (as we are all packing to head to Florida) and Patrick, my six year old son who has autism, was sitting in the back seat between his brothers. He was looking the other direction (he had just arrived with his grandparents). I said "Patrick" and he turned to look at me. "Good Morning" I say, "Good Morning Mama" he replies in a very "perfectly practiced" voice.
"Nice answer" was my reply. Hmm. All of a sudden it hit me. The eye contact, responding to his name....WOW. What a big improvement over a one year old child that had blocked out everything in his life to the point we all thought he was deaf.
Today the whole family....my husband, four children ages 4,5,6,and 7, and two grandparents are all packed into the car and we are heading to the airport. Patrick is very excited, maybe to the point of being overstimulated, and he has asked us a million times about the "airport" and the "beach." I am heading to the Galaxy International Pageant in Florida and we are doing double duty by also getting Patrick an IVIG treatment at his doctor while we are down here. This will be his third IVIG and so far we are seeing improvements in language and overall stiminess.
I wanted to try IVIG for awhile but I got so beat down by all the biomedical and all the supplements that I didn't know what to do. We are doing very few supplements right now but at one point we did at least fifty a day and maybe more. I remember when he was little that we had to mix it and then put some juice in the mixture so we could force it down him with a medicine dropper. It wasn't fun doing this five times daily. I had a chart I made on Excel that was broken down into morning, mid morning, noon, afternoon and dinner. Our lives revolved around the medicine schedule.
I am not sure what really precipitated our turning point. After four kids I was so out of shape I could barely walk up my stairs. In 2006 I got in the best shape of my life. Obviously a mental (and physical....and emotional) turning point for me. I know it might sound impossible to many of you but I urge you.....just do it. A strong, healthy body will empower a strong, healthy mind and that means....YES, you guessed it....a stronger, healthier you.
Our family doesn't let autism rule our life. I think that is what we learned and what got us to this place. When Patrick was 2 and 3 autism ruled our house. No longer. It isn't every book we read and every thing we do. We refuse to let our lives revolve around it. We didn't purposely do this but it was much later that I realized it had happened. I'm not even sure how it happened but it just did...Thank God.
I made the realization after I had to type a paragraph about my children for a magazine article, I don't even remember which one. The paragraph went like this: "Rosemary is 7, she enjoys raising puppies and doing gymnastics; Patrick is 6, he likes trains and drawing, he also has autism; Robert, 5, likes "helping" and wants to be a race car driver; Joe, 4, thinks he is a girl right now and loves watching Spongebob." Autism is just one of the many, many varied facets of our family.
But it doesn't rule us.
I walked out to the van this morning (as we are all packing to head to Florida) and Patrick, my six year old son who has autism, was sitting in the back seat between his brothers. He was looking the other direction (he had just arrived with his grandparents). I said "Patrick" and he turned to look at me. "Good Morning" I say, "Good Morning Mama" he replies in a very "perfectly practiced" voice.
"Nice answer" was my reply. Hmm. All of a sudden it hit me. The eye contact, responding to his name....WOW. What a big improvement over a one year old child that had blocked out everything in his life to the point we all thought he was deaf.
Today the whole family....my husband, four children ages 4,5,6,and 7, and two grandparents are all packed into the car and we are heading to the airport. Patrick is very excited, maybe to the point of being overstimulated, and he has asked us a million times about the "airport" and the "beach." I am heading to the Galaxy International Pageant in Florida and we are doing double duty by also getting Patrick an IVIG treatment at his doctor while we are down here. This will be his third IVIG and so far we are seeing improvements in language and overall stiminess.
I wanted to try IVIG for awhile but I got so beat down by all the biomedical and all the supplements that I didn't know what to do. We are doing very few supplements right now but at one point we did at least fifty a day and maybe more. I remember when he was little that we had to mix it and then put some juice in the mixture so we could force it down him with a medicine dropper. It wasn't fun doing this five times daily. I had a chart I made on Excel that was broken down into morning, mid morning, noon, afternoon and dinner. Our lives revolved around the medicine schedule.
I am not sure what really precipitated our turning point. After four kids I was so out of shape I could barely walk up my stairs. In 2006 I got in the best shape of my life. Obviously a mental (and physical....and emotional) turning point for me. I know it might sound impossible to many of you but I urge you.....just do it. A strong, healthy body will empower a strong, healthy mind and that means....YES, you guessed it....a stronger, healthier you.
Our family doesn't let autism rule our life. I think that is what we learned and what got us to this place. When Patrick was 2 and 3 autism ruled our house. No longer. It isn't every book we read and every thing we do. We refuse to let our lives revolve around it. We didn't purposely do this but it was much later that I realized it had happened. I'm not even sure how it happened but it just did...Thank God.
I made the realization after I had to type a paragraph about my children for a magazine article, I don't even remember which one. The paragraph went like this: "Rosemary is 7, she enjoys raising puppies and doing gymnastics; Patrick is 6, he likes trains and drawing, he also has autism; Robert, 5, likes "helping" and wants to be a race car driver; Joe, 4, thinks he is a girl right now and loves watching Spongebob." Autism is just one of the many, many varied facets of our family.
But it doesn't rule us.
Sunday, June 28, 2009
My Promise Today
Today I promise my children that I will be patient and not snap at them NO MATTER what type of messes occur or what type of catastrophes we have.
Yesterday.....what a day in our household. Somehow I got behind on the house work....a few months ago....hmmm.....maybe a few years ago. And I still haven't caught up yet.
With four children if you get behind on laundry in our home for just one day then you might as well expect to play "catch up" on a laundry game that seemingly never ends.
As much as we have managed to keep Patrick's autism at a fairly good level with bio-medical treatments and diet I can honestly say that Saturday was quite a flare up. Maybe I just make the topic of this post about the importance of following the GF/CF diet. We have flip-flopped around on and off this diet for years; there have been times with four children that I have wanted to believe the diet didn't really make a difference. Well, trust me, it does.
We are back on the diet, fairly stringently. We can tell it is working because our son seeks out play doh, toothpaste, and even certain papers that contain gluten. Friday was a busy...crazy busy...day in our household. We inadvertently let him eat some chicken nuggets that had gluten.
I have paid for it today. I have taken away all kid movies from him to stop with the movie talk (more about that later) but today he found some Leave it To Beaver re-runs. He decided to start repeating "Beaver, Are you Sore?" and "Beaver don't be sore." Over and Over.
Also, gluten will effect him to where he will sometimes growl at me if he does not like something. Different concentrations seem to effect this more....thin crust Domino's pizza can cause a three day growling regression. Today it was just small growling in reaction to my constant punishment for the messes he was making in the kitchen. He wanted to take cups and pour water everywhere then emulate "cleaning day" from Pippi Longstocking. If you remember, there aren't any adults that live with Pippi, and obviously for a good reason. "Cleaning Day" isn't very amusing from an adult perspective. Especially when it involves swishing water around with sock feet on the kitchen floor.
While this is occurring, the other three kids are all vying for attention: a four year old (who acts like he is still in the terrible two's) is saying "hold me, hold me"; my seven year old is saying "You never play games with me" (don't those six or seven daily games of Uno count) and actually I wasn't quite sure what the five year old was doing at this time.
So, today, as I sit here typing at 5 AM, thinking about getting the kids church clothes laid out, realizing that because of the Bible School program this morning that the kids wont have children's church (that means my son with autism will be in the sanctuary all during the church), thinking about getting myself ready, realizing the dog needs water, checking on her seven newborn puppies, I realized that I needed to try hard to be extra especially nice today. I love my children and I don't want all their memories of me to be one of my acting frustrated on the longer days. So I wrote myself a post it "B Nice." Let's hope.
Friday, June 26, 2009
I am sitting here typing this and mentally checking off all the items that I need to do to prepare for the Mrs. Galaxy pageant within the next two weeks. One may wonder why I want to spend my time preparing for a beauty pageant. I was actually doing a radio interview awhile back and the guy asked me why in the world I wanted to do pageants.
Why? Well, of all the negative things I hear that are portrayed on reality shows regarding pageants....which I am happy to say I don't watch reality shows or basically any television shows......I can honestly say I haven't had those crazy experiences. I have met some of my best friends through pageants. I have already met some wonderful women who are affiliated with the Galaxy pageant and I have met some of the nicest, most admirable women I have known through Mrs. International.
Beauty pageants gave me a strong motivation to get my body/mind back in shape after four children. Believe me, I needed something. I think it was the final straw when my husband told me I was fat and I would never get myself in shape to compete in a local America prelim. To be completely up front, I wasn't a size 2 like I had been B.C. (before children) however, I was roughly a size 8 and even a 6 depending on the designer. I also weighed 130 lbs. That comment from him in the heat of anger and just all around misery that we were experiencing with each other at the time turned out to be the best thing anyone has ever said to me.
He said that in mid Dec 2005, and by March 2006 I was crowned Mrs Purchase Area. By July of 2006 I was in the best shape of my life!!!
Additionally, pageants have given me great vehicle for promoting Autism Awareness and now even MDRI, Mental Disability Rights International on a much larger level than I ever could just in my hometown. At Mrs International I got to talk about autism on television with Bob Eubanks (of the Newlywed Game fame).
Hey, and being in pageants has given me this fabulous wardrobe! I sure wouldnt have these clothes if I was just hanging around the house with the kids. Staying in pageants over the last three years has also given me the opportunity to stay in shape and to always have a fitness goal hanging out there. It is a good thing because I havent wavered too much on my fitness routine.
I would urge anyone to find a goal...whether a fitness goal or other goal such as a class or completing an art project. Setting goals can change your life and once you reach that first goal they keep changing and YOU keep growing!
Why? Well, of all the negative things I hear that are portrayed on reality shows regarding pageants....which I am happy to say I don't watch reality shows or basically any television shows......I can honestly say I haven't had those crazy experiences. I have met some of my best friends through pageants. I have already met some wonderful women who are affiliated with the Galaxy pageant and I have met some of the nicest, most admirable women I have known through Mrs. International.
Beauty pageants gave me a strong motivation to get my body/mind back in shape after four children. Believe me, I needed something. I think it was the final straw when my husband told me I was fat and I would never get myself in shape to compete in a local America prelim. To be completely up front, I wasn't a size 2 like I had been B.C. (before children) however, I was roughly a size 8 and even a 6 depending on the designer. I also weighed 130 lbs. That comment from him in the heat of anger and just all around misery that we were experiencing with each other at the time turned out to be the best thing anyone has ever said to me.
He said that in mid Dec 2005, and by March 2006 I was crowned Mrs Purchase Area. By July of 2006 I was in the best shape of my life!!!
Additionally, pageants have given me great vehicle for promoting Autism Awareness and now even MDRI, Mental Disability Rights International on a much larger level than I ever could just in my hometown. At Mrs International I got to talk about autism on television with Bob Eubanks (of the Newlywed Game fame).
Hey, and being in pageants has given me this fabulous wardrobe! I sure wouldnt have these clothes if I was just hanging around the house with the kids. Staying in pageants over the last three years has also given me the opportunity to stay in shape and to always have a fitness goal hanging out there. It is a good thing because I havent wavered too much on my fitness routine.
I would urge anyone to find a goal...whether a fitness goal or other goal such as a class or completing an art project. Setting goals can change your life and once you reach that first goal they keep changing and YOU keep growing!
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