Friday, October 23, 2009
I have felt pretty crappy for a while now, and its sometimes kinda depressing, today though, I was reading my emails, I am on a PTC support group, its not very supportive for me, afterall I have had this disease for more than 5x as long as most of the people on this list, and well, I know that from research these people with shunts are in the Honeymoon stage, the average shunt fails within the first 6-18 months, and most of them have not had them in for 6 months total (and many have had repeated failures already…no comment there) ANYHOW…its not a very good place for me to get support anyhow.
Knowing what I know about PTC, Knowing what I know about Chiari, Knowing what I know about shunts, and Praying God will allow me to get the decompression done sooner rather than later, yes, I know its in his timing, but I know the visions said the headaches would stop after the brain surgery, and I have suffered almost endlessly for nearly 20 years now….
So, Here I sit, I read her hopeless, helpless email and I was taken aback, GOD in his amazing way brought me back to his reality for my life RIGHT NOW…Where I am Right now.
I have been at the new church for almost a year, as a matter of fact in just two Sundays it will be a full year.
There is but one thing I miss from living down south…Current contemporary music…I have no musical talent, and have no idea where the music pastors at those churches get the current stuff, but these 3 songs I am about to put on here, REALLY helped me get through the first 5 weeks especially, when I couldn’t get out of the house on my own, let alone go to church or anywhere… NOW, when I feel down, I still go back to them, I rely on their words to bring me back to Gods promises, since often its music, like the Psalms that bring us closest to him when we need it most.
Tuesday, October 20, 2009
The Topamax seems to be working to help limit the intensity of the headaches, from a 12 to about a 9 most of the time, on a 10 scale…I know it doesn't sound like much, but it's a big deal to me, I haven't been headache free in more than 5 years, and before that it was only for 3 years and then it had been what, 9+ years before that? Oh, I can't do the math anymore, either way, it has been LONG time that I have had a headache and the last time I was headache free Lauren was less than 2.
Topamax has a few side effects, one of which is weight loss, likely caused by nausea and upset stomach… ok, I think that may have something to do with intolerance of certain foods, I started back on it on October 7, 2009 at night, 100mg 2x a day, I LOVE chocolate, I LOVE carbs, I LOVE certain foods, I LOVED drinking Pop, All of those things have become virtually intolerable to me over the last few weeks.
When I eat chocolate even in small amounts, I feel deathly ill, My stomach just aches and while I don't feel guilty in the sense that I did something wrong, because I know I should never deprive myself of something because I will over indulge if I think it is to be totally off limits, it's ok to have it in moderation… but my stomach seems do disagree.
Carbs, in LOW moderation, VERY low, amounts I can somewhat handle, but they seem to make their exit faster than their entrance, Pop, tastes like I am drinking metal.
My discoveries…Meijer Fruitsations water, Generic version of Fruit2o, about $3 cheaper (frugal me on cheap income and water refusal, I do not like the taste of water unless it's REALLY cold, and even then, it's not my thing, only during the summer, I don't like it most of the time…just when I am thirsty for it…a weird thing, I do like it when I am out, and over juice or pop, but I do not like it over these flavored waters at all) However, this stuff can NOT be frozen like normal bottled water, it concentrates the sweeteners making it TOO sweet when you get to the bottom, so I invested in a water bottle I will load with Ice and top with a water bottle, 24 oz overall, it will stretch and thin, and I am hoping it will help raise my consumption a bit…and I supported Breast cancer, by buying my choice water bottle (it's a pink Breast cancer awareness bottle, with a straw)
I am also aiming for one protein shake a day at least…they are super sweet so I think I am going to try to thin them out a bit too (maybe I will use Milk Ice Cubes, or Ice milk)
Monday, October 19, 2009
I have been making Chili since I was a little girl, it's a household favorite, I decided to try a new recipe though since we have become fond of Wendy's chili, NEVER AGAIN, it was so bland, I think Ketchup has more flavor, this tasted like Tomato soup with beans and hamburger, it was BLAND…
To salvage, I will package the soupy mess into quart bags, I should get maybe 8 bags, I will freeze them, when I pull them out, I will add a can of tomato w/green chilis , THANK You Aldi, 45 cents a can to salvage a meal I can afford, and more cumin and chili powder, I won't need to add anything else, there is lots of beans, meat, and saucy tomatoes, just no spice…
For a long time I made detailed recipes for chili and it took forever, It was good, but too much work, a few years ago before my surgery, I canned chili tomatoes, that year we had the BEST chili ever, I had tried canning salsa, but they came out chili tomatoes instead, it was too watery to be salsa, and thickened nicely in chili and all my recipes I use rotels in…and that's just about anything that's not spaghetti sauce.
We like Mexican cooking.
Two days ago, I made a Tortilla soup that I goofed on too, but that came out to die for, I forgot to add the carrots, lowered the carb count, when all was said and done, when I plugged the whole recipe into sparkpeople, the entire recipe had 308 calories, and that didn't count that it made an entire crock pot full. We skipped the tortillas, and used healthier choices…it all worked out much better, was flavorful spicy and delicious.
A week from today I have a Dessert to bring to a church dinner, I chose dessert because I can control what I am making carb wise, I have to watch what I am eating, and its hard to do when others are preparing, and its fall and Chris doesn't like my pumpkin mousse/cheesecake, I am not sure what it is… the recipe says its cheesecake, but I have edited it so much, its not really a cheesecake anymore, its more of a mousse, and I serve the crust on the side…For a dessert, an entire recipe that serves 16 only has 2,219 calories, 374 carbs, 45 grams of fat, and 71 grams of protein…now its not HEALTHY, per se, but if I had to choose, this is definitely a better choice, unfortunately most of its fat comes from cool whip, if only there were a healthy substitute for that texture…Hmm, now to think.
Saturday, October 17, 2009
I was thumbing through looking for some copy work for Lauren for this week and next, a dear friend of mine introduced us to Handwriting Without Tears, it's been a great help for us, BUT, it's not really enough writing that's not school related…she has her school work, and that's ok, but I wanted her to have something that was specifically more Handwriting for now, so I was looking for Copy work… but, most of the copy work I found was quotes from secularists, which I guess can be ok, if the child is older and doesn't ask who this is, or what this means, right now my 7 year old does not need to know what some of those quotes really mean…more importantly I can't explain them in a way that she can understand at this point in her life or mine…Ethics messes with the mind and confuses is…J
So Anyhow, I was looking for something that was Exclusively Bible verses…and I found this… The ABC's of the Bible, so Starting on Monday, We are Putting away our Handwriting Without Tears for a Month, and doing Copy Work, 26 Bible Verses worth.
This includes some verses she already knows, some she will be learning this month in Children's church, and some she recently learned in school and was Thrilled beyond thrilled to hear pastor mention in church this past Sunday…Being 7, her attention span is relatively short, I have always wondered how much she gets out of the service since the main question I get is…is it over yet…but this week I got the elbow in the hip, and she was so excited, I hushed her and she looks all dejected, and looks up at me, but mom, I KNOW that verse!, my heart melted, she had done it in school the week before in her bible book for class, and actually REMEMBERED.
So now our new Goal is 26 verses in 26 days, She will earn a reward if she can tell me all 26 verses and their locations at the end of the 26 days SHHH that's a secret, I want her to Hide God's word in her heart, so I may make this a monthly challenge, I liked memory verse challenges when I was a kid, and I always won them, although we had them in church against the other kids, we also had sword searches, which I would fail miserably now with my bible, parallel bibles don't work well for sword searches, two versions side by side make it so much harder, and Bible Trivia games, I knew God's word Backwards, Forwards and Inside out, unfortunately, it took going away to learn exactly what all that meant…I knew what I believed, but I didn't know why til I went to a school whose beliefs were different…not significantly different, but different enough that I had to learn where I stood…Now, I want Lauren to know not only WHAT she believes, But Why, I want her to Know the word Inside Out, backwards, Forwards, and I want her to be able to have that Faith that is unshakable, that I had just a year older than she is now.
Wow, I just realized, I have been a Christian since I was 6 years old, 1 year younger than she is now, my faith was firmed just one year older at 8, when my family became Christians, somehow its easier when you are not living a faith alone…Lauren has asked Jesus in her heart, But I do not think it's that firm faith, kind of like mine was not a firm faith at 6 years old, my actions did not prove I was a Christian at 6, but by 8 it was showing…, I was growing in God's word, I am hoping the same will come for her too. It's been 24 years. Amazing, and to think, all this changed because my dad did something wrong and my aunt took me to church, dad got arrested, and from that God got a hold of him and our WHOLE family dynamic changed.
He pulls us from the muck and the Mire, and molds us into the most beautiful pieces of pottery.
I love the story of the silversmith, when asked how you know how long to keep the silver in the fire, its right when you can see your reflection in it, God is that silversmith, and when he sees his reflection in us, Only then will we be taken from the fire… Lord, help him to see his reflection fast. This fire hurts.
Thursday, October 15, 2009
Today is much much better than yesterday was, I do not feel half dead today, and I actually have a little strength, not much but a little.
We worked on copy work for school, I need to find some good notebooking sheets for Lauren so that's my afternoon project, Chris's Tuesday/Thursday class has moved buildings, I do not particularly care for the location but the new parking location gives us a beautiful view to study fall and winter weather for science.
Lauren is not good at sentence writing, she just started writing full sentences recently, so we are going to use copy work and sentence starters to get her wheels turning.
I just read my favorite Blog Dishpan Dribble and today she has a post on cleaning house like a 12 year old, here I am doing exactly like she says, I get so easily distracted and have struggled with this all my life in so many ways and she posted this as if talking right to me, I felt so uhm, guilty, lol, I needed it.
I have never been taught how to clean, I do not even like having my in-laws in my home, my immediate family doesn't bother me, I have tried Flylady, I have tried Messy's Anonymous, I have tried numerous other methods of getting my house clean, I have had people come help me clean. It is an embarrassment.
I grew up in a home significantly worse than mine, we are talking, and my parent's house took nearly 3 days to prepare for even family to come visit. My parents even lost my sister and I due to the fact that they could not keep the house clean while we were growing up.
When I met Chris in 2000, his mom did not keep home either, she still doesn't, while I was not a great keeper of the home, she also did not keep her home well and he was not taught to keep up after himself either, so neither of us had good habits instilled in us at any point in our childhoods. When Lauren was born….Her house was so filthy he was not allowed to take her out of her car seat and place her anywhere but his lap, there was dog crap on the floor, not safe for babies, cats use litter boxes.
Now, 9 years later, I still haven't mastered keeping the home, I still am afraid to have people over, my house is still a struggle to maintain, I can never get it clean enough to make it presentable, and its shrunk over the years, over and over and over again.
I think reading that post really brought some light to my eyes, I have no structure to my schedule, with Lauren I do, I give her specific steps, ONE step at a time, at least with her, I do set certain steps and organize it one part at a time, I do not allow her to get distracted, NOW I have to teach ME not to get distracted. I am ashamed to admit, I still get distracted with all the things like that, But hopefully, thanks to Mrs. Darling, a wonderful Mom who has been a mentor in more ways than one to me, I have learned a lot from this wonderful woman, whom I have been reading for years all the way across the country, I hope I can continue to learn from her wisdom, She is the epitome of the Proverbs 31 woman as the older women teaching the younger to be what God has called them to be.
Wednesday, October 14, 2009
Lauren is enjoying her day doing school while I am recovering from the massive affects of the nasty Topamax, gosh, I thought since we are on day 5 and the affects had been so mild up to this point, unlike last February, that I was going to have it easy this time, boy was I mistaken, ugh…today, I got lost 4 times in my own neighborhood, once heading home from the bank, once I missed a main street that I take to get to where we were going, then I missed the main road to head home, we stopped to grab some lunch and I nearly ended up on the expressway, after three bouts of getting lost, I was not about to risk missing my exit and ending up in Timbuktu.
This is nerve wracking, Chris and I are both stressed out, I am supposed to have class tonight, but I am staying home, my driving skills with the headaches being this bad are just not safe, I will email the instructor and let him know, he is cool, I will ask him to email the questions for next week and be praying that the affects level off by next week.
I will be upping my fluid intake by eating more soups this week, tomorrow I am making Chicken tortilla soup, minus the tortillas, basically a spicy Chicken soup, I will add lots of Peppers and Veggies, the spicy Peppers tend to help with the headaches some, not sure why, but they seem to. I think part of the reactions may be from dehydration as dehydration also seems to increase my pressures as well. It's a catch 22 and I lose either way.
I am so grateful for the ability to home school that I do not need to send Lauren off to someone else to educate her, when I am sick, no one needs to stand at a bus stop and wait for her, no one needs to make sure she is ready at the crack of dawn (noon is a wonderful time to start a day when things need to be done in the mornings, and 8 am is great other days, I love being able to be flexible)
I love how if we have things going on, we can school in the evening, instead of during the day, and when we go up north we can do school on vacation and never miss a beat, we can make a vacation of the lighthouses in Michigan (our plan is to eventually take a trip to every lighthouse in the state, maybe by the time she graduates, we will accomplish that mission.
Tuesday, October 13, 2009
With the exception of the Homeschool stores Gizmos and Lakeshore (which are actually teacher stores not homeschool stores, but since I shop there and I homeschool, they became homeschool stores to me :-D or craft stores, I rarely ever buy anything specifically brand name, and this year was the first time I have EVER bought expensive curriculum for Lauren...EVER, up til this point, I had spent maybe $100 total all together in about 5 years of homeschooling, this year, because I did not know if I have an upcoming brain surgery or not, and I still don't know what Gods plans are, or when they will happen, I wanted to be prepared and bought full years, I will be doing this until I have the decompression and do not have to worry about recovering from traumatic surgery and I can work with at least some planning with her.
This project has been so hard, my brain is just so tired, they put me back on Topamax this week, the side effects haven't been half as bad as last time, I think the reason I got so sick last time is they upped my CPAP pressure from 10-17 the same Friday as they upped my Topamax from 50mg daily to 200mgs daily. I am also trying the Protein shakes at least once a day...
I did some research since all the docs want me to at least consider gastric bypass, I do NOT want to go that route, I just don't feel thats what I want to do at this point, but I will try the diet that goes with it and the combination of the protein heavy diet (basically the pre-op diet) and Topamax, which has the side effect of weight loss, partly cause you can't drink pop, lol and are always nauseas and light headed, but I can live with those this time, I can sit up and I don't feel like death warmed over this time around, we are on day 3, by day 3 last time, I wanted to just have God take me home.
So far, 3 days in, I have lost 6lbs, not bad for someone who struggles to walk down the steps to get out of the house, I miss having good balance, Hopefully when the medicare kicks in I can start Physical therapy again and work on some balance issues again...I think its the Chiari messing with my equilibrium.
The Bypass Diet recommends Flavored waters like Fruit2O, Thats stupid expensive, so I found Meijer and Aldi carry store brands, in Varied flavors, Lemon tastes OK over Ice, but Kinda like Glucose tollerance test drink without it, YUCK, the others aren't bad, 0 carbs, 0 calories, and I am actually getting in about 64 ounces a day, now 64 ounces is not much, but when you figure I was doing good to get in 16 before, thats doing REALLLY good for me....my short term goal is to drink 6-12 bottles a day. I have roughly 225 lbs I want off, so its a long road and in February I will see the endocrinologist and we will see what she thinks we need to do, we will also decide then who the next specialist we will see about my head...since at that point we will have insurance.
My next Dr Appointment is November 4th with Dr. Turner the Neurologist to see how the Topamax is working...Hopefully we will at that point be upping to 400mg daily,