Cravings?

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)

 

 

Failed Chili and other mealy things

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.

I Just HAVE to Share

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.

Thanks for all the prayers

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.

Homeschooling Comfortably from the couch

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.

2 days til my Half Way Point

Oh goodness, its been a Busy 8 weeks, In 2 days My Marketing class will be over, and I will be SO happy, did I ever mention I do NOT like Marketing AT ALL? I took this class online because I knew how hard it would be on me because I am not easy to be marketed to, I did not realize just how hard I am to be marketed to.

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,

Headaches Out of Control

School is overwhelming, but I am happy to be there, I had an ethics exam on Wednesday and a Marketing project due Monday, but whats getting the better of me, MY HEAD...I have not had a break from the headaches since mid August when school started...I am trying to do things regardless of the pain but I am finding more often than not I just want to sleep.

Poor Chris will rub out my neck muscles nightly but by morning they are right back where they started, sometimes worse than the evening before, no matter how much we try to relieve the pain it just keeps getting worse.

I do NOT want to go to the ER, but at the same time, I am running out of patience for dealing with constant pain and suffering.

Brings new light to what Christ went through on the cross, He suffered for us, and died, sometimes I wish that this was a terminal illness that it had an end sometime, because at least that way I would know there was an ending coming...right now I do not see an end, and that part scares me to death.

Ugh

Ok, I have had 3 Ethics classes, Love the teacher, but my body HATES the class...I don't know if its this class in particular or if I have gotten that much worse over the summer....I do not spend much time upright since I feel so run down ALL the time lately, so sitting upright for 3 hours listening to a semi interesting lecture/discussion...which I do participate in, by the way....is not so fun.

I have not felt well since day one, but I am feeling worse and worse as the days progress...today was REALLY rough, Chris and I fought ALOT this morning, to the point I nearly left him at Arby's...I do most of the driving. I just went and sat in the car and cried...man, he needs a job, or something...it was too much...he has been nitpicking at EVERYTHING, and I don't feel well enough for him to be nitpicking...then we fought about going out to eat, then about money, on and on it went ALL day long.

Then I went to class...and let him know I made it, then texted him at our break, and well he asked for Ice Cream, I am 45 minutes away at class and he can't make ice cream for him and Lauren???? He says he breaks the spoons, Like I care, I am not home make it yourself...he actually LET Lauren stay up so I could make them ice cream when I got home, I was beyond furious, so I really didn't talk to him much....He needs to GROW UP and grow up now.

So, My pain is compounded with the pain I am married to, the daughter who is insistant that she knows more than ANY and Every Adult in existance and well I am just tired of it all....

I need a few days off...and if I don't get them, I will likely wind up in the ER because my body will FORCE me to get that time...as it often does. Grr....GRRR

I feel like death warmed over

Ok, Ok, I know its been a week and last week was really busy, but I slept when I wasn't running Napping alot and I feel so sick its rediculous.
I just want to crawl under the covers and just not wake up anymore. Its TOO much.

And so it begins

Well with the first day of classes came the first day of Pain, ok not really, but I am miserable, I haven't felt this bad in a while, but we trudged on getting lots of done over the last two days...Now...I am ready for BED.

School Starts Tomorrow

Ugh, Fall Semester at school starts tomorrow. Somehow after last semester I am not looking forward to it nearly as much as I was in the Winter. I think part of me just thinks its going to be VERY hard on my system. I was doing so-so before I started school and went downhill rapidly after I started in January.

This semester, I am taking one online and one on campus class...Both start tomorrow. Ethics and Marketing. Ethics is on campus...so its a bit more stressful. We are homeschooling full time, we started 2 weeks ago and she is on her first break this week...til Thursday, but Thursday we are picking up some homeschool books (molly from the American Girls collection, or any other american girl...we will likely read through the whole series this semester and next)

Monday through Thursday for Lauren, and I will keep one day free from here on out. We may pick up a PE at the Y from Port Huron. I will talk to a friend and learn more about it....we will also be incorporating field trips....busy busy busy.

Oh Gee, Where do I start

...pain has been out of control in the heat, stress is abundant, but all in all God is Good, he has made things happen that didn't think were possible.

Monday we are going to can peaches with a friend. She has never canned before so I am going to have fun showing her and letting her taste the results. We will only do one or two canner loads.

School has kept us busy, although I think Lauren is going to be doing way more than a book a month if I don't find a way to slow her down...I don't really want to do that, so we will likely be adding in more stuff. She did a whole weeks worth of work almost again and its only Tuesday.

This week I hope to get to the fair too, I love the Armada country fair. I love seeing the animals and exhibits.

Tired now, my head is getting worse I think I am gonna head to bed early tonight.

Joys of Homeschooling

Just to get a good laugh I went to the local schools school supply request list.
Hmm, If I have to buy THAT for public schools what do they provide? Dh reminded me a seat, but even that requires fundraisers.

Lauren would technically be in 2nd grade this year, so This is what she would NEED for school.
Pencils (no mechanical pencils) (I bought 30 pencils for 30cents at Office max for our Homeschool, this should last us about 3 years, we also splurged and bought an ever sharp liquid graphite pencil becuase someone is obscessed with pencil sharpeners)
Large box of Crayons (Define Large, 24 is more than sufficient but most schools require 48, no more no less, 48 is $3.99, 96ct (our splurge this year) was $4.99, but a 24 ct, is all of 20 cents a box, I have a nice stash of those (about 8 boxes)
2-3 erasers 99cents
Ruler $1.00 I bought later several 10cent ones that are actually higher quality
Scissors (1.79 for 2 pair)
1-2 Glue Sticks (we do not use glue sticks, but I did pick up regular glue clearanced out from last year for 20cents a bottle at Meijer, Glue sticks are too messy and wasteful)
Pencil box or bag for materials (39 cents I bought 3, but Lauren only gets 1, they aren't for pencils though, they are for index card games)
4 Pocket folders (10cents each except we ONLY get the pronged kind since the other is a waste of money)
4 Pocket folders with clasps
Highlighters What does a 2nd grader need High lighters for?
Spiral notebook 5-15 cents depending on where you get them, we have a stock from several years ago when they were a nickel a piece, but we use them for way more than school
3 Boxes of Kleenex for the classroom we rarely go through 3 boxes of kleenex a YEAR in our home, so what on earth does the classroom need with about 90 boxes of tissue thats 10 per month they are there??? and what does our tax money buy, in MI its certainly not toilet paper, last year some company had to donate that to schools....where does is all go?
A pair of shoes to be left at school for gym class Do I look like I am made of money, that would mean I would have to purchase TWO pair of tennis shoes? or send her to school in dress shoes daily, which wouldn't be a big deal if a Uniform was in place, but its not, so I have to get clothes, and a minimum of 4 pair of shoes for my child for school, 2 pair dress (cause Black and white don't go together) and 2 pair of tennis shoes one to be used for MAYBE one hour per week? Hmm, I don't get it, thats about $40-$80 just in shoes.
Sanitizing wipes (once again where are my tax dollars going? I use good ole vinegar to sanitize at home or lysol, and one can can last me up to 3 months, so 3 cans should last a class room 9 months, why does my child have to provide wipes, which are such a waste of money to begin with? when a $1 roll of paper towels (which the school should provide) and a Spray bottle of cleaner which they should also provide) should clean the desks and surfaces in the classrooms for at least a month, 30 kids, uhm, less than HALF of them should need to provide this...thats almost 3 years worth of cleaning stuff or am I crazy. Cleaner concentrate from my local GFS is about $10, but makes about 10 gallons of sanitizing spray...should last them a while, and they also have the bathrooms for WASHIN their hands, the sanitizer is not healthy on the skin too much.
Box of Ziploc bags (ok, I use ziplocs for toys and such, I also use them for COOKING, but what are they going to use them for in school?)

Needless to say if I have to buy all this for PUBLIC school, why not homeschool, the money I save in buying multiple outfits of clothes (a minimum of 7, so they are not wearing the same thing every day) The stuff I have to buy ANYHOW to send them to school, and the cost of having to pay for field trips and the like...well that just paid for my curriculum (a grand whole $230 for the year, and thats my highest year thus far...we are doing 3rd grade instead of 2nd, and our fieldtrips are mostly free or miniscule in cost, because we are not coming in large groups.

Plus she won't be bored waiting for the teacher to catch up to where she is, she wont have to relearn what she has already learned while she waits for others to catch up...

Someone on my support group asked why we homeschool, lots of people answered, but I guess, I don't have an answer that is clear like others...I homeschool because its what we feel is best....It started me not being ready to give up my baby, then somewhere along the line I realized that God gave me the right and PRIVILEGE to TRAIN my children in his ways, not someone else.
I have had to protect my baby from lots of things, but right now, I am just happy she is mine and we are gifted with being able to teach her anything.

What a week

Lets see, Last Saturday we brought home a sweet kitten, she isn't so sweet anymore, she is full of mischief but we still love her and she is growing on Zeke too, the 9 year old catten of the house.

Tuesday we had our new fridge delivered, LOVE IT!! it beeps when its not shut all the way and so filling it was kinda annoying because it took a while to transfer everything. THe freezer is wonderful, its packs alot and is actually a little larger than my chest freezer, go figure. Its 6.3 cubic feet and the chest is 5 cubic feet.

Friday we went shoppin to really fill it, I haven't done shoppin like that in a while since my old fridge FROZE things and the freezer couldn't keep things frozen.

I am still recovering from that. Saturday they came and picked up the old fridge, the cash for clunkers cars program has a similar program for fridges and air conditioners...needless to say we were happy to see them come get this beast, the $50 will be directly applied to our electric bill.

I was even able to cook at home last night.
Today its hotter than all get out, feels like temp was 108 after church and actual was about 98...too hot for me.

My pain levels have been extremely rediculously our of contorl. I guess thats what its going to be like til I get in to see a surgeon that wants to FIX these problems.

The kittens are now getting along pretty good, They play and sleep together now, they are very sweet together. Ebony is full of energy though and today has not been good to her.

Overall, I am tired and life has been hectic.

Rearranging while handicapped

Ok, its been 18 months and the bug has bit me to CHANGE things in our house, A few weeks ago I bought Easy Sliders furniture movers, Hmm, they will get a work out as I make room for everythin to have a home once again.

DTE will be collecting my old fridge on Saturday and we think we may have figured out how to hook up our icemaker without drilling into the water pipe (a trip to HD is in order)

So far though I LOVE my new fridge, tomorrow though, it will get the true test as it gets stocked with Food for our family.

I haven't had that urge to grocery shop in ages, it just takes too muchout of me. I have many things I need though, and a meal plan of sorts in the making, we are trying a Bariatric surgery post op diet until I can schedule my appt with the endocrinologist.

I have my scale now, my measuring cups, and now its time to start cooking agian...Wish me luck, my body has not liked being upright for long.

I have to find foods I can cook in bulk for the week...but not beyond that. I usually have the energy to cook one day a week the rest of the week I struggle like mad to get anything at all done.

My Family Grew

I went to get a fridge and brought home an adorable 11 week old kitten....The Pet Rescue was at ABC warehouse/Gordons, along with many other companies a big affair, anyhow two kittens were on the euthanize board, and We brought one of the two left so now there is only one, hopefully he will find a home too....Ebony (our 11 week old black princess) is getting along with everyone, except Zeke my 9 year old cat...he is keeping his distance but TRYIng to get used to her.

MY new Fridge will be delivered Tuesday, A french door bottom freezer with ICE maker...I am so excited to have an Ice Maker, we go through a ton of ice in this house.

He Is Still God in the Fire

Ok, I know I just posted, and its rare to get a double post, but I just keep thinking about this, I am still in prayer mode, its been a really hard few months, and I am playing my favorite tunes....

Even when things seem out of control to us, they are never out of control to him.

God....is ALWAYS in control of whatever comes my way, I feel taken back to camp meeting days, Winterfest, youth camp and prayer meetings in college, where the Holy Spirit fell and the anointing of Gods presence was too much to contain.

I am overwhelmed to see whats coming next, God is in total control, and I look into the scriptures to see that if WE, his people, Pray, HE will do great things...

GREAT THINGS....

A few thoughts, but I know the Master of the Wind

Today has been emotionally draining, so, when I am having a rough day, I spend alot of time in Prayer...

I have a few verses that really come to heart when I am struggling 1 Peter 5:7 and James 1:3, and Romans 8:28....God really is in this even when it doesn't look like it.

I am so tired of being sick

Today I went to church, lunch, then slept ALL afternoon, grabbed some light dinner, feel incredibly nauseas, and feel like death warmed over.

I am trying to watch some tv and going to down about a quart of Crystal Light, but my goodness it seems to be killing me slowly...

I don't want to give up, but I am really feeling worn down.

PTC and Chiari really kill the head. I want insurance so I can get the endocrinologist app scheduled.

still struggling

Well, I am worn down. My head is not cooperating, I am exhausted. My brain is killing me slowly.

Its been a rough week, and I don't know how much more I can take...

Just OFF

Ok, I am tired of whining, but since its my personal journal, if you don't like it tough.

I am freaking out, my balance has been off on and off for a few months now, but this week its been so bad that Chris has mentioned it. I wobbled with my cane a few times today and that always poses concern..

I have had at least one near fall every week for the last 5-6 weeks. I don't want to go back to the doc til I have insurance (or my next appointment if that comes first) Its just scary to think of what might be happening. My nerve damage seems to be stablizing itself, I am not getting as many shooting pains, but my balance is shot and even sitting up is often a challenge. I am also struggling while driving, I am noticing even my vision seems to go one sided. I will call if it continues, or head to the ER, but I don't really want to do either since there isn't much anyone can do without the insurance.

My new social worker is very nice, she is going back over what the old worker didn't take care of and getting my medical bills taken care of...better late than never. She is also very respectful so that gives me extra confidence in her (and they paid my back gas bill, which wasn't much, but it helped ALOT)

Anyway TRYING to get to sleep not having much luck.
Good Night

Still in extreme pain

Its gotten so bad I don't remember the last good day I had, I used to get a few here and there, but not lately.

Every muscle and joint and nerve hurts so badly its rediculous.

I want to get something for the pain, but it makes no sense with no insurance....it costs too much.

I am having trouble focussing and thinking straight, my head hurts so bad all day and I am constantly nauseas. I am just scared this is never going to get better.

I think I am going to try drinking more this weekend to see if that helps...starting tomorrow I think I am going to eat less and drink more...lets see if I am dehydrated and thats my issue.

cant catch a break

Ok this is getting rediculous, I have been drinking, trying to stay hydrated in hopes to kill this darn headache, NOT WORKING....Its starting in my neck and going around BOTH eyes, I get so nauseas and sick I just want to puke.

My balance has been off more than on and yesterday I got lost drivin roads I drive routinely, Frankly I am getting scared. I can't concentrate and am struggling to do ANYTHING at all. I do not like feelin this way, I do not nor will I ever be able to accept this new way of life, this is no life, and no I do not plan on ending it....I get so sick of people asking if I am depressed...NO, I am in pain, and while the two can go hand in hand, I do not feel depressed, I feel frustrated that I can Not do ANYTHING without causing my brain to rebel.

I am tired and going to bed early tonight, I can barely see, actually as I type this I can't make out the letters on my screen, I just know where they are and can feel that I hit too many keys, trying to focus it in is killing me Good Night, praying for some relief tomorrow

Pain Out of my Mind

Ok, I am tired of this, all afternoon I have been battling a HORRID headache that started at the base of my neck and creeped its way across my face, down my shoulder and its just getting worse, I just took a couple of flexeril in hopes of relaxing the muscles so that it will ease a bit.

I am totally nausesas and really just feel sick. I haven't been like this hardly at all since my tap in April, May and June I had one REALLY bad day each month, so far this is the 2nd one in July, and its only the 8th.

Family is Better, and Much needed Relief

Yes, Yes, we worked everythin out, I knew we would but I really REALLY needed to vent the other day.

I have been a part of a PTC support group since my last MAJOR flare (after my post-op complications I felt very alone in the journey) Anyhow...
I know my problems are not mostly PTC related, I have done quite a bit of research on lots of it and with the diagnosis of the Chiari last year I started doing even more research....well I am seeing that its more the Chiari issues that I am dealing with, not a huge deal, its life....but my docs all wanted me to get a VP shunt placed last year and needless to say I was not looking very highly into it since its major brain surgery....don't ask why the potential of decompression scares me less, it doesn't make sense to me either.

Anyhoo...On our PTC support group recently we have had Several people get VP shunts, NONE have had truly positive results. One has been hospitalized for a small bowel obstruction (a mere 3 weeks post-op, they claim is unrelated) a second one wound up with a major infection and was basically told to stay away from everything for another month, and a 3rd wound up in more pain from the shunt, headaches worse than before and basically just majorly regretted these decisions.

My docs said unless it started affecting my eyesight they would not consider a VP at this time, the risk outweighed the potential benefits....I was questioning that since I have had very little quality of life ever since the flare in 2007 and before....now, Since none of these people had major vision problems and all had the VP shunt put in with all of its complications, I am seriously grateful for MY doctors who said NO, its not worth the risk at this time.

Ya, I will get sick over and over again and it will cycle, I get about 2 good days a week or so and try to do SOMETHING every day, even if its just to go out, and when my body says enough, I rest and recover....its a cycle I have been living with for many years. I would rather get sick over and over again and have a few good days here and there then suffer not knowing when or where I was going to get sick because of the shunt. I know their failure rates and they are HIGH. If it starts to REALLY affect my vision again, I may consider a shunt, but I will literally have to be going blind as fast as I was when I had my Optic Nerve Sheath Fenestration done in 1998 to consider the VP shunt.

Ok, so now you ask why do I not feel at all stressed about a possible decompression surgery, much much riskier than a shunt, much much more painful, and overall just a harder surgery? Well for some reason, I know its not the time for it right now, and I know the time is coming, I am having drop attacks at least once or twice a week, I still can't navigate the stairs, my balance is still way off, and I am having problems swallowing my meds including the CHEWABLES. I know when the time is right, I will have complete peace over it, like I did when I had my ONSF and shunt put IN, I had a weird sense about the revision, something just seemed very uhm....lets just say I knew in December that something more was goin to happen and the surgery wasn't even scheduled til January 2nd for February 1st.
I am glad God did not tell me what was going to happen, I wouldn't have gone through with it and I would have never found out about the Chiari, probably making it much worse in the process since the shunt would have continued draining even at its slow pace.
I know God protected me then and he holds me now through this and will protect me in the future as we go through this battle....it WILL be ok, GOd is in control.

Grrr

Chris and I are fighting AGAIN, he is getting on my last nerve, ok, he got on that a long time ago, but its just getting worse and worse.

My headaches are through the roof today because of the stress of dealing with him. All he does is play games and eat. Oh ya, and complain about Lauren or I doing this or that.

Well today he got mad because I said something the first time Lauren kicked her feet, all he does is yell at her, no other discipline at all, and he expects me to "fix" the issues....I can't fix her, half of this is just him being around her so much.

Then while she was being read to tonight she contorted herself to kick me in the face...while that upset him, it made him madder that I yelled at her after the 7th time of her kickin me (I never yell at the first or second incident)
He tells me I am over reacting, the only time he spends with her is when I am asleep or at a doctors appointment and I am over reacting? She may kick him under the table, but I am tired of it all. He is ignoring her whining over not getting to see fireworks, it was her choice, since she got sent to bed for misbehaving, but is he making an effort to support in discipline, NOT ONE.

I am so annoyed right now, ya, its his birthday, but he and her faught on mine too, all day they bickered and over half of our plans blew up in my face. I am just tired of dealing with his crap....HE NEEDS to get a job and get out of the house some. Sitting in front of that game all day is just too much for me.

Busy very busy

What a week it has been.

On top of being very sick many of the last 10 days we have had a gazillion things going on.

I had a birthday, not a good day. Lauren had a birthday, a bit better day, We rearranged two rooms (flip flopped them)Lauren got a new bedroom, when it is Finished being put together, I will post pictures.

Chris has a birthday Saturday.

I had a doctors appointment, she is sending me to an endocrinologist and gave me a new inhaler.

I had a DHS Appointment, that went well considering their roof caved in this past Thursday.

We will do a phone interview instead, but I think I am gonna like this worker.

A good friends mother in law needs prayer, she had a stroke.

My health has been declining, but I keep trudging along.

HAPPY Fathers day

What a week its been.

We visited friends yesterday, a long day indeed, but much needed, my head and leg did NOT appreciate it though.

Then today, we went to my inlaws.
when we got home I took my vicodin and got ready for a nap, never got it, and Lauren threw a KING SIZE tantrum, but its over and I am tired...

I can't wait til school restarts for her in July, she tested into 3rd grade in all but Math so she is doing that this summer so we can start full 3rd grade in September.

Feeling MUCH MUCH worse today

Ok, I knew working out even with something as simple as a video game would have repricussions, but WOAH, My head has been KILLING me all day, I did play more today though even though I was hurting, I felt it was best to try anyhow, I am looking forward to other games in hopes that I can see some results....even the limits of my disability, being active even a little has benefits.

My pain level on the 10 scale is about a 12 and NOTHING has penetrated it today not even sleep...I will give it a few more days before I call and ask for something to kill it....I know there isn't much they can give me since the pain meds do not help much if any.

I will always work through the pain til I can't take it anymore....tomorrow we find out whats up with Chris's unemployment and that will make a difference in what we do next.

I NEED him to get a job even if its part time... because right now we are over the cap for SSI, and I still can't get insurance coverage.
Grr. At least they will cover the back stuff for the last 3 months when I was in the hospital, I have to call the hospitals and my social worker, PRAYING like all get out that I have a new worker, the last one was not very good.

We Got a Wii

Ok, I feel like crap, but I worked hard today.
I got a Wii today and played hard....remember I can't be on my feet for long periods of time due to pain, I Bowled a game, then I played a game of Tennis, then I did the stamina challenge (I came out at a 54 year old, not bad when you figure I am on disability from being sick and I actually did this without breaking inbetween times)

My head, neck, and Shoulders hurt REALLY bad, plus I am tired.

Not sleeping well

Ok, I have had it up past my eyeballs, which I wish were closed right now.

I was having issues with the headaches, but now I am on meds that are supposed to help me sleep...the problem? Well they get caught in my throat as I try to swallow them...we are not talking horse pills either we are talking oh 1mg pills, little itty bitty things.

I am SO frustrated.

My neck and shoulders are killing me too, its like my head is too heavy to sit on my neck...
I am afraid to cry, because while emotionally I am ready to...well, LOL, it hurts worse when I cry. I want to close my eyes and my eyelids hurt...I am so tired of fighting this, I am praying that Chris gets a part time job so that I can get SSI, oh they will pay my medical bills for April when I went to the ER twice, which is SO cool...but I desparately need insurance and to seek another surgeons opinion.

If I get insurance, I will ask Dr. Turner for a referral in October...I will wait that long, I think I can handle the wait...but I will have to mention the swallowing issues, it seems like more and more food is getting stuck too...but Chiari while it has swallowing issues, this almost seems like a gag reflex in overdrive, but maybe I am overthinking things so I don't put myself in a panic noticing yet another symptom related to Chiari, the bladder issues totally freaked me out....Dizziness and headaches I have had for so long they dont worry me, but my arm and leg numbness made sense...I don't need to fear, but at the same time, if its progressing...well, I don't want anything permanent to happen.

Tired, goin to try my meds and get some sleep, have to go to SSA tomorrow to drop off paperwork, then going to Thrift store to get Lauren clothes, I HOPE, then I am going to come home, go drop off paperwork for MI Works, and go grocery shopping, I hope I can stay awake through the hockey game.

Stress and dissappointment

Well, I had my neuro follow up this past week.

I was not prepared for what he had to say "my hands are tied"

I will be seeing a Bariatric Surgeon in February when medicare kicks in along with an endocrinologist...to see if we cant figure out WHY I can't lose weight and hope that does SOMETHING, at the very least it should reverse the Diabetes.

I am feeling more and more run down. Daily headaches, and I can't count the number of other things going on right now....

God is provident though and he will work this out, even though at this point I don't see how.

Long Week

I feel as if I am fighting a losing battle right now.

I am having reflux like symptoms, no clue whats causing them, but its nasty.
I have had numerous accidents this week, I need to drink less or live in bathroom one of the two.

We finished off a semester of Homeschool and I am going to do the unthinkable and test Lauren, if she is ready, we are going to just start her on 2nd grade when the books come in.

My pain has been out of control for too long...but I will have insurance in February...progress?

Tired and hurting. Listening to music, going to sleep

8th Anniversary

WOW, I have been married 8 years.
We have had a major event or more every year and our love has grown stronger through them.

Another week gone by

This has been a very eventful week.

Today we filled out Laurens SS app, she won't get anything yet, but will be eligible based off of cost of living til she is 18 so long as I am still disabled.

Overall, things are ok, my head has been constant pain for what feels like FOREVER. Its extremely weather oriented, yesterday it was 80 and I was sick enough to take my med trio, usually I stick with JUST my Klonopin, but last night I added a flexeril and a vicodin just to sleep, still took me almost 3 hours, grr.

Today is much cooler (about 20 degrees) and I needed that to break the pain cycle again.

I am seriously thinking of adding Central AC to the house.

And so Ends the Semester

This has been a whirlwind of a 2009

I have been sick and in constant pain for more than a year

I decided I was going to TRY to live life anyhow, and for me, I saw huge successes amongst the struggles.

In January I started school again, College was not easy for me since my pain does not allow me to sit or stand for long periods of time without movement.

I took 3 classes, Anatomy and Physiology (the school I went does this as one class most universities do it in 2-3 semesters)
I struggled like crazy to pass this class, missing a week from my Emergency Room run did not help in any way, but I got a 2 week reprieve since Easter was around the corner...nice recovery time, but missing that one class hurt big time.
I wound up struggling to carry a C- all semester, then at the end, Wowzers, I did it, I only needed to average a 70 on the final two tests to get a C without the minus...but I was thrilled when I checked grades, I got a C PLUS, yes, I did, I screamed, raised my pressure and made my self sick, but it was good to be sick cause I was happy not cause I had some stress that set my system off.

I was perfectly happy to go rest, I had NO plans on the agenda, we were done and it was ok to feel weak and worn down I had done it, I passed A&P in ONE class...yes, I am proud, with the fact that my memory has been getting significantly worse as my pain increases my brain power seems to be decreasing...hopefully we will be able to see pain management soon though.

I passed my other two classes with A's I had Medical Terminology (kinda an easy class for someone with all my medical problems), there were only 2 chapters where I did not see the specialist that was covered, that made me sad, but still, it was an easy A.
The other class I took was Business Communications, a required class for most majors...I learned alot, mostly confidence from this class.
I thought at first it was going to be AWFUL, it was speeches and papers, neither of which I like...but I made it.
I got a great teacher who really felt that the learning was more about the experience than the assignment, it was a practice class for the real world, by doing the work, and having perfect attendance, I got an A there too, if I had missed a class I would have had an A-
It was in this class that I went to class so sick I could not function and went to the hospital AFTER class, that day I got my spinal tap and have been functioning about 20-30% better ever since.

Also during this semester, I applied for and was approved for disability. PTC is very damaging to the medical resistant patient, my neurologist wants me to have surgery but the surgeons say I am too high risk and so we wait.
Currently, I am doing my follow up and maintaining a minor drug regimen ( I have muscle relaxants and pain meds that I take when the pain is unbearable, and an anti anxiety muscle relaxant that I take nightly to help me sleep through the pain, plus my B12)

I am still planning on staying in school, I will be taking 3-4 classes next semester depending on how I feel when registration rolls around. My goal is to get enough pain relief where I can get through my certificate program, but if I can't pass the physical, I will switch back to HHIT which I could then potentially do from home or part time or if I improve enough, full time.

Pain

Today I finished up classes for the semester, my pain levels have been through the roof this semester. I am proud to say I made it through with at least a 3.0 gpa but I have suffered alot too.

My head pain is averaging an 8 most days and I sleep almost more than I am awake.
My leg is improving SLOWLY, but when my head gets bad it quits entirely.

I see Dr. Turner in just over 2 weeks, and am hoping he can give me some sense of what to do next.
My medicare will kick in in February or March I believe, at that point I am sure he is going to send me to see a neurosurgeon. Either way I am struggling to have confidence in much of anything.

I did make it through the semester with only 2 ER runs, but I am fearing more may be on the way.

Disability Stage 2 complete

Well I received documentation today, I will start receiving payments for May, first deposit will be in June, I will be evaluated every 3 years, hopefully this does not last that long, I am hoping to see another surgeon when I get insurance and HOPEFULLY, that will help ME get better, instead of keep on fighting this.

Disability Stage 1 complete

Today I received the letter, I met the medical requirements for disability.

According to research that is a very good thing, I move on to stage 2, deciding if I am capable of working.

My disability date was actually September 1, 2007, which tentatively gives me 15 months back pay as of RIGHT NOW.

Praying hard that we get through the next step as easily since I need medicare, it will kick in effective February 1, 2010, once I make stage 2.

No Nap, and Pain returned

Ugh, I was doing so well, Tonight my back, neck, and shoulders feel like I don't know what Hurts like all get out.

I am nearly in tears if I move my head at all...

My leg, My goodness, Uhm, I am tired of this, VERY tired.

Go figure, most of my day is great so my pain decides that its goin to RUIN my day.

Heading to bed, and I am prayin for some GOOD hard sleep.

Positivity

This has been a rollercoaster of a week, and its only Tuesday...yesterday I finished my Medical Terminology class, YAY Me.

My head can't make up its mind and has been floating around a 6 for so long its gettin annoying.

I feel like its stuck.

Lauren has been better the last couple days, I think its cause she konws I am tottally serious and wont be puttin up with her crap.

I am worn out though I have to go pick up a script and some groceries this afternoon but I need a nap first.

FIFTEEN MONTHS

Thats how long it has been since I have taken a bath, walked without pain, played on the FLOOR with my daughter, or played with her in any truly effective way.

Thats how long it has been since I have known that My PTC won't be going away anytime soon, and if you take away 3.5 months away from how long I have known about the Chiari, and the road that I have been living learning about why I feel the way I feel.

Its amazing how much I have grown in these 15 months, I trust God more, I lean on him more. My husband and daughter...well they have come quite a ways too, this has been emotionally harder on them as they don't understand how I feel or what to do to make it better.

Laurens maturity has gone the wrong direction, she is growing down instead of up...its too stressful on a baby girl.

I have applied for disability, I have had more medical appointments that I ever thought was possible. Ironically, this all started TEN years after diagnosis.

Thank Goodness for Packaged Curriculum

Oh MY goodness, life is KILLING me.
I am so worn out ALL the time, I average a nap a day and my headaches have not been letting up.

My leg is swollen beyond belief and I don't know what to do to fix it.

I know God has a plan, BUT I want to know what it is...I WANT TO UNDERSTAND.

I am not handling this very graciously this week.

I want to be Human again

Ok, I am tired of this, I feel whiney and crabby.

On the outside, noone can tell the raging emotions til I burst. I am extremely stressed out, I know God is in control and that he will get me through this. He gives me the strength I need one day at a time.

He gives the peace that passeth all understanding which is good because I have NO understanding left.

I am ever so grateful for a family who God put in my life that went through this before though, She has been such an inspiration to me, God gave her to me just when I needed it most.

Her daughter has Chiari and everything I have learned makes me feel less crazy, no I am not fully completely in the situation her daughter was in...but I do need to get through this in babysteps.

Rain and Pain

And Swelling
Its rained almost all day today, My head has totally agreed that rain is BAD
My leg has agreed Rain is BAD
My balance has agreed Rain is BAD

Tomorrow is church, and I am still up waiting for my meds to kick in, this is nuts.

Presentation Day

Glad yesterday is over, I can't wait til the end of the semester I am worn out and my leg is acting up too often.

I have needed my cane for all but 2-3 steps all day and the bad pain is crazy.

Tomorrow is my Biology Exam, I am tired and ready for it to be done.

Update

Well, I thought it was a good day, My leg started acting up when I was showering tonight, balance is back to being gone...I am in a lot of pain, I am going to make a flowering Tea and then hit the hay early.

Very Sore.

Yesterday

I slept almost all day, between head and balance it wasn't worth getting up for.
I homeschooled from the couch, I love being able to do that.

Today I feel middle of the road, balance isn't as far off today and my head is behaving somewhat, I can handle a 6 headache.

maybe its 3 steps back

I am going to start charting better, my balance is off I fell in my kitchen today, I was trying to sit on a chair, I am tired of poor balance and dizzy spells. I am having major issues with turnin my head and my arm and leg are acting up really bad.

I think I am going to take a vicodin and do my homework then my Clonazepam, and go to bed. My head cant take this...its unbearable.

one step forward two steps Back

AHHHHHHHHHH

Ok now that I got that out.
Its been a good few days. Thursday I felt mostly ok, Friday I felt GOOD for most of the day, a REAL treat....then BOOM, Friday evening I realized I had overdone it significantly when before 8pm I was in Massive amounts of pain.

Saturday I woke up feeling once again like I had been hit by that freight train, My God will this NEVER end?

I took two vicodin (which I had avoided the last two days) BEFORE noon, I left class early because I was not able to function at all.

I feel so awful, If I thought another Spinal Tap would help I would go back to the hospital...its THAT bad.
I didn't get enough relief to go through that again.

I will be dealing with this til June, but I now officially think its time to call the lawyer in hopes that I don't NEED to appeal.

How can I function like this?

Mediocre Day

I have had a fair day Mostly moderate pain in the afternoon and I have gotten lots done today.

My head is starting to bug me more and more. Its not been too horrible though. I am glad of that, I am hopin for another good nights sleep. Only 4 weeks left til School is done.
Counting down.

Mostly Great Day

Today has been very long.

I got to go to Church this morning. I love my church and being sick last week I missed and oh man, I missed it big time.

Lauren and Faith had a bickerment (not quite a fight, but Laurens feelings got hurt)

I came home and made my last non raw meal for the next 10 days, we had a spiral sliced ham and mashed twice baked potatoes.

I have taken 3 half doses of Vicodin (it doesn't last 6 hours, so I take half doses so I can take it more often) Anyhow, usualy a half dose will last me about 3 ho(where a whole dose only lasts me 4.5 hours) So I took my first one when I started having major blind spots in my vision, my head was KILLING me, but I took my meds.

About 2 hours later, still has not kicked in, crap, Take another pill, that was an hour short of what I usually get...took over an hour to kick in, and only worked about an hour, Ok, now I am irritated...wait, wait, wait...its now been 3 hours, lets take another one, and Hope....that was 3 hours ago, I took the Klonopin to knock me out 2 hours ago and guess what I am still awake and still in pain.

Gives a new appreciation for what Christ went through on the Cross, Today was resurrection sunday...and Christ died on the cross for our sins, the ultimate sufffering, but I dont know how much suffering I can handle.

Tomorrow I see Dr. G, I hope he has ANSWERS for me, and not just lets slice and dice .

You Tube has play lists

I have much music that I would love to own, but have not yet bought.

I have typically found them on Rhapsody (only allows 25 plays per month) or You Tube, Today I found I can actually make a play list of my favorites on You Tube, I was so happy, I now have nearly 20 songs set on a play list, and I can listen to my music before I buy my CDs, I still plan on buying Kari Jobe, Jessie Rogers, and Matt Redmond, but I have some of the others already, so I am excited to be able to listen to them until I can get them.

Good Visit with MIL

Today was my mother in laws birthday, we don't usually get along and with the way I have been feeling I was hesitant to go see her.

I am trying VERY hard though.

It was well worth it, she gave me the name of her Lawyer so I can finish filing for disability.
She showed us about a new pasta thats ZERO carb and Zero Calorie, its pure fiber, I will try it, if I like it, I will order some...when a pasta craving comes, I would love to fill it with a healthy alternative, she has Celiacs, so I know it has to be good for her to get it.

We talked alot about where she has been and where I have been, I am thinking she may have the CHiari too, her symptoms are the same as mine almost exactly, she is going to talk to her doctor tomorrow and see if she has any experience treating with Cranial Sacral therapy. I have also talked to her about whats wrong with me...it was a really good visit, I am glad my pain meds got filled because I wouldn't have made it without them...my pain is not very happy with not being taken care of.

TOday I have been in quite a bit of pain, I filled my vicodin this morning, I have taken only 2 caplets, but I want them to last, so I won't take more til the pain is unbearable again.

Maybe about an hour from now, when I am taking my Clonazapam, that ought to really help me sleep good.

Opthamology

Well I visited opthamology today.
My vision has gone done significantly, I lost some more color vision as well.

My nerves are fine and my visual fields are stable as well.

So, now we ask, is it really the PTC or is it the Chiari?

I will learn more on Monday afternoon at Dr. Guthikondas appointment.

Home from Detroit

Well, lets see, we have two known diagnoses, I had them before I walked in so I knew they were there.

We had three Neurosurgical consults, don't know why I had to schedule an appointment with my neurosurgeon if I had all these consults, but I was told to, so I am going.

I also have an appointment with opthamology, my vision has been affected with this latest bout of PTC, so I have to have an eye exam to see how much and why.

My manual fields were not that great, so I have to have regular fields.YUCK.
My head is getting a wee bit better, but I have been on Morphine all day and tomorrow I am going to pick up a script of Vicodin.

I am tired now, and I will be taking my Clonazapam, and going to sleep early, hoping for about 7 hours tonight.

I will know more Tomorrow and Monday on whats going on with my brain.

Heading to DMC

We are leaving at about 11am tomorrow

A 4 hour night

Well we are rotating between 3-4 hours of sleep, I still feel like I have been run over by a freight train, this afternoon I see Dr. Butler.
I have lost 14lbs in 5 days I feel really week but I do feel hopeful and full of peace now.

I emailed my friend to thank her for calling my church and having them pray. Her husband had lifted me up at their mens prayer breakfast, and later that day I started to have peace with whatever God's will is in this.

Thursday and Friday I had no peace about it whatsoever.

So now I finally feel if I am told to go to the hospital and referred for surgery, I feel it will be the right time.

Why Don't I feel better

Well that tap lasted not nearly long enough.
I follow up with family doc on Monday, and I am scared he is going to send me to Detroit anyhow, my pain is TOTALLY out of control, if I am sitting up or laying down, it doesn't matter.

If I cough or sneeze my right arm goes numb, I can't turn my head and I am in absolutely unbearable pain still yet.

The Clonazapam, I thought helped me sleep, now I think it was more from being up for 24 hours straight first. I got 3 hours last night, I am in the worst pain of my life and I have to make my puter screen big to see what I am typin.

Reading is challenging and the nausea and pain are just nuts.

I am starting to worry that this is more than just a ptc flare.

My Trip to Henry Ford

Last night I lost my battle to wait this out.
I gave up.
I felt like such a failure....hold it, who did I fail?
I did not fail myself...in reality, by waiting, I would have been failing myself more.

I headed up to Henry Ford after school last night. I thought it was going to be a long wait to get in since the ER waiting room was quite full.

I waited all of 5 minutes or so.

I was seen by a nurse, she took my medical history. I was in unbearable pain.
I was seen just a little bit later by the ER doc.
He walks in and says someone has a headache...well DUH. He was great though.
He got me all set for a tap almost no questions asked, then he had lots of questions.
When was your last CT, who is your Neurologist, when did you see him last, etc
The first one was hard, I don't recall, the second one was EASY Isaac Turner, the BEST Neurologist in South East Michigan. and Obviously the third was easy too, Uhm, yesterday.
He called Dr. Turner to get his blessing to do the tap. There was a miscommunication between Dr. Turner and I in his office, but he will get over it...I make my medical decisions, he just helps...I trust him alot, but the decision he was making in that case, I didn't feel comfortable with at all.
Dr. Turner did order the Spinal tap for me, with orders to bring my pressure down to 18, that reduced my pressure by half...made me a bit dizzy am still light headed and nauseas.

Up in Anesthesiology, the Dr was absolutely amazing. He got the needle in first try, used lots of anesthetic so I didn't feel any thing til he took the needle back out. Talked while draining it and he and the nurse Shawne were just great to be around, I felt a sense of relief...confidence...trust...peace.

God really truly brought me on THIS day, because I needed THIS staff, the nurse who was my nurse upstairs doesn't usually work nights, but last night she worked a double shift. The doc in the ER did not question my certainty that I knew what I needed and wanted, and that it was going to be OK.
I am so glad I didn't wait.

I feel better knowing I am taking care of myself. Even if its hard.

Not What I expected my 300th post to be about

I took my first dose of clonazepam last night.

It did what Dr. Turner Promised...I slept 4 1/2 hours thats 2 hours more than Tuesday night and 1 1/2 more than Monday.

There is absolutely no pain relief though.

Today has been really rough

I saw Dr. Turner this morning, He is Amazing.
However...
Reality hits
The topamax is NOT working, so he took me off of that
The Flexeril is not working, so I only need to take that when I REALLY need it
He gave me Clonazepam to try so I can get some sleep, HOPEFULLY

He told me to make up what I remember about what I was told for restrictions based off of the headaches, its not really in reacords anyhow.

If I go to the ER, He wants me to be sure that I get a Spinal tap in the proper position (duh, sorry, that made me laugh, and it hurts to laugh) He wont order it because he knows our financial concerns, and he is willing to wait til we have medicaid otherwise...even though he doesn't want to.
He was willing to have me go to the ER in Detroit and just see residents, however, they turned me away WITH insurance...and he was furious.

THe docs he is going to recommend for after I get disability (and or insurance) don't accept medicaid, so it will have to wait til after we have medicare. I am totally stressed over waiting.

Tomorrow is the Big day

Ok this is a multi faceted post
I am THRILLED I dot have to wait any longer for my appointment, My head has thoroughally gotten the better of me.
I have felt aweful all day.
The only think keeping me home is that I know I go in tomorrow to Dr. Turner.

I also found a PTC support group the other day on Daily Strength, Its been great.
I needed it Oh how I have needed it...I May not feel better, but at least I dont feel so alone anymore.

count down

Ok, I nearly made a pitstop on the way home from school tonight, make it 7 near trips to er, I can NOT deal with this anymore.

Pain on 1-10 is not fair, 25? higher?

Every day it seems like Wednesday is further and further away.
Watch I will feel good on Wednesday morning when I go in...just watch.

Ok, Its gonna be a rough go

I am counting down til Wednesday.

I see Dr. Turner Wednesday morning, and I am so tired of feeling like crap, I actually feel worse this month than I did last time I saw him, it keeps getting worse, I am ready for a trip to the ER, and I haven't been there in a year.

I am totally overwhelmed, I just want a break.

I need a pain vacation.

Still sick

Ok, I am getting so tired of this.
I am ready to go to the emergency room, I will talk to Dr. Turner next week, this makes 6 times in 5 weeks I have contemplated a trip in and I have 5 days to go, AHHH!!!

I am so stressed out its not even funny.

Rain makes me miserable

And today is a rainy day.
I slept til 10am, got up and my head is just throbbing, I hurt all the way down my right side, we wont mention that my left leg is hurting too.

I am working on my business paper too, its driving me insane, I cant think straight, because thinking hurts. breathing hurts, I see Dr. Turner in ONE week, and I have to let him know that I have contemplated a trip to the ER on at least 4 occasions in the last 5 weeks, thats too often.

I am praying for the disability to go through soon. I am so tired of being in constnat pain. Praying CHris gets a job with good insurance if I get full disability because unless I get a VP shunt, and the Chiari fixed 2 good days a week is not enough to carry a full time job.

Next Neuro App scheduled

The queen of procrastination has scheduled her next appointment.
I had been having issues with not wanting to schedule it, fear is a great motivator lately, pain has been really bad and I know I need another tap.

I called the office this morning, my appointment is April 1st at 8:20am I am trying to not be nervous, I liked him last time but I dont know if I want the higher dose of Topamax either, the last round made me so sick, I spend 10 days down.

I am just getting tired of this mess its been too long now.
I have been having worse headaches than usual and am always tired too, I will be asking for anti nausea meds too, something I have never asked for since I have been sick in a long time.

feeling somewhat optimistic

Someone with PTC was approved for disability this week.

I survived

The appointment this morning took almost 2 hours, I left hurting so bad, from sitting so long, half of my problem is that I can't sit that long, and moving to start over felt good, but I had to go sit again I actually had an hour long appointment and a 45 minute long appointment, oh did I hurt.

Now its time to pray but I am not even sure how to pray anymore.

On one hand, if they declare me disabled before September of 2008 I will get significantly more money, but wont qualify for SSI which means no insurance. THAT DOES NOT HELP me get better.
On the Other hand, If I am disabled AFTER September 2008, I will only be qualified for SSI, which gives medicaid, but less money.

Since I left my job back in 2003 because I was sick all the time and being a mom was more important than trying to fight it, I don't know what will happen. I am trying to get training so it looks good, but now its a waiting game.

If I qualify for disability on the PTC, which is what is getting the better of me RIGHT NOW, even more than my leg has been....its what wakes me up, its whats making me sick all the time, and its what at least one of my meds is treating... or trying to treat, anyhow. Its whats limiting my ability, and its whats giving me my vivid dreams again. Maybe another post, we shall see, maybe. Anyhow...THat has been ongoing since 1998 with ONE remission, but several times with lack of treatment because I learned to live with it...or was stubborn and scared...but it has been being treated and monitored thoroughally for going on two years now, I can't afford to NOT take care of it for Lauren's sake.

If I get it based on that I will need Chris to get a GOOD job with insurance, because we will not qualify for medicaid at all. We will likely lose all of our assistance. In the end it will work out ok, but the wait will be really rough.

At this rate, I feel like I let my family down. I have never gotten to this point, I have always taken care of them and this was REALLY hard for me, now I wait, we will likely have a psych eval and many other appointments, I will work through it and try not to put cover it, Its very hard for me, I am used to bein strong for my family and right now I feel so vulnerable.

Stressed Out

I was up late last night, My heart was aching, my head was aching, my back pain is spreading, it is crawling both up and down, it has made it up past my bra and the low back has been in constant pain especially when I breathe.

I found a Caring Bridge page last night for a lady who has PTC, it made me cry since she has had so many shunt procedures, many less spinal taps than I have and much lower pressure, and very little visual damage. I am so happy she has been through so little but at the same time I am so frustrated because my docs refuse to do anything until I lose my vision so I suffer constantly, it was a very hard read, I have learned to live with this for so long.

I am quite grateful that I gave up on pain medications when they quit working since I am afraid that the amount of pain I would be in would be significantly greater if I was on them, my drug tolerance is so high anyhow. Tomorrow I go for my SSI Appointment they called this morning to remind me, I can't believe how real it is, I JUST want the insurance, I NEED a spinal tap so bad its not funny.

I have been researching the gastric bypass stuff, and honestly I doubt I would even be able to have one since the hospital that the neurosurgeon wants me to have it at does not do them on people who have had a heart attack, so when they overdosed me on the dilaudid, they may have cost me that opportunity too....I will have to play a nice long waiting game and see.

I am scared, emotionally, a wreck and not sleeping well anymore. I would hate to think I may qualify for the SSI on my sleep apnea based off of the mental case, that is quite neve wracking, but whatever it takes. Lauren is taking a break from school for a moment before she starts her phonics lesson, I can't believe she actually finished her math on time, she had to do two lessons today because we got grocery shopping done yesterday morning while I was feeling pretty good, we don't waste time when I am feeling good since we never know when it will happen again anymore.

Touch of the Masters Hand

Well it was battered and scared,
And the auctioneer felt it was hardly worth his while,
To waste much time on the old violin but he held it up with a smile,
Well it sure aint much but its all we got left I guess we aught to sell it to,
Oh, now wholl start the bid on this old violin?
Just one more and well be through.

And then he cried one give me one dollar,
Wholl make it two only two dollars wholl make it three,
Three dollars twice now thats a good price,
Now whos gonna bid for me?
Raise up your hand now dont wait any longer the auctions about to end,
Whos got four Just one dollar more to bid on this old violin?

Well the air was hot and the people stood around as the sun was setting low,
From the back of the crowd a gray haired man,
Came forward and picked up the bow,
He wiped the dust from the old violin then he tightened up the strings,
Then he played out a melody pure and sweet, sweeter than the Angels sing,
And then the music stopped and the auctioneer,
With a voice that was quiet and low he said now what am I bid,
For this old violin and he held it up with a bow.

And then he cried out one give me one thousand,
Wholl make it two only two thousand wholl make it three,
Three thousand twice you know thats a good price,
Common whos gonna to bid for me?
And the people cried out what made the change we dont understand,
Then the auctioneer stopped and he said with a smile,
It was the touch of the Masters hand.

You know threes many a man with his life out of tune,
Battered and scared with sin and hes auctioned cheap,
To a thankless world much like that old violin,
Oh, but then the Master comes,
And that old foolish crowd they never understand

Song lyrics Wayne Watson, Best song written when we don't understand WHY?

So Much on My mind

Oh I don't even know where to start today.
Its been interesting,
We went shopping, God blessed us with all sorts of really good deals.
I love being frugal and having it work out where we would have literally spend nearly twice as much.

Lauren ACTUALLY behaved today.

I have been on the 200mgs of Topamax a day for 2 weeks now, and officially can say I DO NOT LIKE the higher dose, my headaches got worse, my pain in my leg decreased, my nausea, tinnitis, intestinal issues, and dizziness all increased, and now I can't focus on anything, I am tired all the time but I have trouble sleeping.

Uhm, We have to work on Laurens Pinewood Derby Car tomorrow, no weights for her, its all about participation, long story short, we ran out of time to get it to Mr. Steve to get it weighted before next Friday.

I have to work on my paper for Business Communication, not to hard seeing as I have my work online already just have to print it off and type it up.

I have my interview for disability on Wednesday, I am praying really hard that that goes smoothly since we have 10 YEARS of this mess. I hope they take it all into concideration and do not deny it automatically.

I am drained, physically, mentally, emotionally, financially.
Spiritually, though, I know God is working, somehow, somewhere, God is working his hand in this...what appears to be a disorganized mess is a well organized planned orchestrated event, and he knows exactly what he is doing.

My Defective Brain HELPED Me

For once I am totally GRATEFUL for my not so healthy brain.

Ok, I was totally terrified when I was diagnosed with PTC back in 1998, the thought of having to see a neurologist for the rest of my life scared me to death, and the opthalmologist scared me even more since I saw all the blind people on my first visit, and to be honest, I quit going at least twice.

Then I learned all I could because being sick stunk, I got my shunt put in and I went into a shunt induced remission, HEAVEN, Til it failed and I was right back where I started, staring at all those charts of brains and eyeballs made my head spin, I knew them inside out. Those models in the offices could not possibly be parts of my body.

Or could they? Hmm...I wanted to go into nursing til my nerve decided it was going to quit working PERIOD.
SO I decided Medical Assisting, I could be up and down and it gives me my medical environment. It still required Anatomy and Physiology (or a generic equivalent) I chose to take the AP class in case I wanted more later....Ahh, that first test was MURDER Muscles and bones, bones werent bad, but muscles and the skull were just too much...
this time
THE Brain, Ear, and Eye, Hey, I know this stuff. Mine does not work quite right, or at least some of it has been fixed, lets see the optic nerve is here, the cerebellum is here Oh look thats where those cereberllar tonsills are SUPPOSED TO BE (Chiari malformation) Look, Thats where all that extra spinal fluid is made (the choroid plexus) Identifying the ventricle was actually fun to me, It all made sense. It actually scared me a little how much I understood because I could explain it to my classmates medically to help them understand it but hey, I understood it and when it came to the lab practical, I got an 88, which for someone who does not test well is really good, I did not do as well on the lecture, but I was within 10% of my classmates which made me happy.

And for my fellow PTC patients Guess what we discussed in class today, the blood and of all things Carbonic Anhydrase, and what are Diamox and Topamax, but Carbonic Anhydrase Inhibitors, so I am actually going to learn how our meds work and what they are supposed to do...I say supposed to do since my pressure has not gone down, my headaches are still horrid, the diamox NEVER worked and the 200mgs daily of topamax is just helping with the nerve pain in my leg it has not touched the pressure, I can feel it daily and my eyes and ears water to tell me its high, so we shall see when I get my tap, it wont be too long now. My docs are finally helping me.
Now that I finally have a doc that is much better, I did some homework on him the other day, I have a friend that may know him from residency rotation too, Dr. Turner graduated from University of Maryland Medical School in 2002 and Josh graduated from Wayne State University Medical School in 2002, so they would have both been on staff doing residency at Childrens at the same time because I know Josh did a Pediatric Neurology rotation... Hmmm Maybe thats why my brain hurts, I think too much, anyhow my new neurologist is my age, and maybe thats why he cares more, its easier to see a patient who is significanly different in age as just someone else, but when its closer to home it brings it more to life, it could happen to your family, thats why younger docs tend to be more compassionate as of late....just my observation.

Why I am Glad we Homeschool

It has been a very rough year for my family, between me being very sick for over a year, my husband losing his job, and us moving...our lives have been turned upside down.

Lauren is currently working at a 1st grade level in all but reading, there she is reading at almost a 4th grade level, her comprehension is remarkable.

If we had put her in school when we were pushed to, I am afraid she would have missed a lot of time, I could have never gotten her to the bus or to the school when I was so sick, Chris had to be to work way before our public schools started and I could barely get out of the house to get to doctors appointments.

Now when I was all dopey, we did school on my bed, she climbed up and we did our lessons right there, she never got behind and things kept going. When we moved, she did not get behind, when we got all the obnoxious snow this year she did not get snow days, or it was converted into school lessons, she learned about its formation and about the weather patterns.

I would not trade homeschooling. Even when I get better, we will still homeschool, we all find it much better to take the time to teach her at home she is learning far more than she would and we are happier with this choice.

its back

headache back full force leg pain joined it today, no clue why.

Meds are finally kicking in

The higher dose of topamax is FINALLY kicking in.
It is not penetrating the headache, but it is helping with the leg pain a bit. I was researching how it works and I discovered that it shuts the pain signals off.
I learned that and also noticed it when I missed a driveway on my way out today. Uhm, Oops.
We shall see the headache is about a 10 average, but I am getting used to that, it seems that its what it normally is though. I rarely get lower than that and when I do it goes no lower than an 8 or 9 anymore. It spiked after they took the shunt out and I have only had a few good days since.

Ministry?

How do you know if you are called into the ministry?
One of the biggest clues to knowing is if your calling is correct is if when you pray for someone and the prayers actually match their needs.

I got a strange message from someone this week. They feel called into ministry, yet time after time I see something totally different.
I have been a Christian for more than half my life, I have worked in ministry, been active in many many ministries, and never once had someone tell me that what I prayed for them was inaccurate towards their circumstances.

We have been having a lot of struggles recently but God has continued to bless our family, anyone who has read my blog can see that, He has been my strength time and again. This week was very very rough for me, but yesterday I saw a bright spot and shared the positive....I thought it was a good thing to do since this "friend" has been struggling in her own life.

Well, she comes back to me in a text that she sees a dark cloud over my life and that I cant see the silver lining and cant see Gods blessings, HUH? Say what? I have been sharing with her how God has been my strenght and provisions all along, I have shared with people even in the hospital how he has been the only reason I've been able to stay hopeful.
Say WHAT?
Ok, I lost it, I did write back but How can you go into ministry and be so off? She has written me many times in deep despair about how she is struggling to trust God in her problems? is she seeing her and translating to me? I don't know, but this is not referring to me.
I know God is in control, our financial situation brought me a close friend in church, my health situation has been a testimony to many people over many years.
God has always used it...I am not afraid of the next steps, as he has directed this for almost 20 years now, what is there to be afraid of.

God is in control...I am not, nor would I want to be. I would mess things up, I like things to be in order, his order is perfect, mine is not necessarily perfect in his way. I am confident that whatever happens will happen for the reasons he has guided.

As someone going into the ministry, I would hope that people would thoroughally pray and make sure that they are sure that they are in the whole will of God when they speak to someone else, making sure that what they are saying is for that person. I know I am in no way what that was for this is not the first time someone has done this to me. As a matter of fact someone out of the will of God just like that drove me out of church many years ago questioning my faith because I trusted God to go through my first surgery with my PTC...Hmm, God was in control then, used me right there in the hospital to witness to the nurse who needed to be brought back to him...I don't think it was a coincidence that he kept me overnight, he needed me to speak to THAT nurse...no I didn't push God, I just said that I wasn't afraid that God was going to make everything ok, and she asked how I knew, and I answered. When I was in the hospital last February each different floor had a purpose, an aide wanted to know why I was crying, I was singing praise songs because I was praying I was so stressed out, I was singing Matt Redmonds song You Never Let Go, She understood the maker and we talked for almost an hour about how great God really is, even in a hospital room after a heart attack I was more than happy to share Gods love.
He is amazing anywhere.

How much sleep does one person need?

I guess I should not ask how much sleep does one need, lest one thinks I am depressed.

I am far from depressed, miserable is more like it.

I am definitely experiencing some of the side effects of the higher dose of Topamax, for one I have had the worst headaches in the world since last Saturday,

I can feel my pressure is higher than usual, which is either Chiari related (I am guessing that because the rain came yesterday, and atmospheric pressures trigger Chiari headaches) or PTC headaches either way its definitely pressure because my eyes and ears are draining and have been for a week now.

My CPAP pressure was raised last Friday and the headaches kicked in Saturday afternoon, by Sunday I was feeling awful, and Patti could see it, but she always can tell, she is good like that.

Sunday afternoon I filled the Topamax and took the first 100mg tablet, because the headaches were so bad I figured the higher dose might help kill the darn thing faster, boy was I wrong, here it is 7 full days later, I missed church today because I was SO sick, yesterday I was sent home from class by my instructor because you could see how miserable I was.


I go in on the 18th of March for my SSI interview.

I am hoping for immediate Medicaid so I can get a spinal tap scheduled ASAP.

So far I have taken 6 naps in 3 days plus nighttime sleeping. I am still tired and it hurts to hold my head up.

I have not felt this weak since Lauren was born.

saw new doc

digging up old records
pain 10+
waitin on next step

extremely discouraged

yesterday and today I had some bleeding issues I bleed for 15 minutes from a scab and I called the rehab doc, scared me to death. then today I had the same thing happen from a different one for 10 minutes.

My headaches have been totally out of control for the last 4 days, I feel so aweful, I don't know if its from the change in the cpap pressure, or the upped dose of topamax, but its just getting the better of me.

Chris says he hasnt seen me this sick since 2001 when I had the shunt put IN. I know my pressure is UP and I feel totally awful. I am getting to the point of going to the er, and I don't want to. I don't know how much more I can take. Today even the pillows hurt my head.

CPAP Stinks

Ok, it doesn't stink, this new pressure does, and if I don't adjust soon, I am calling and they are going to have to adjust it again, 17 it very high, and its hard to breath, my headaches have been much worse at the higher pressure and I am not sure if its due to the pressure of the machine, the stress level of disability process, or the fact that its just plain getting to be about the time for another spinal tap.

I am praying I don't need to seek an attorney (I already have one) to get the disability, I am sick and tired of not feeling good and I just need a break.

Tonight I start the higher dose of Topamax, I am so nervous, I have read so much about side effects and I had nasty side effects on diamox to the point of having to be taken back off right away (less than 2 months) but if it helps the headaches, I am almost willing to endure side effects to not feel like death warmed over daily.

ssi appointment set pain untollerable

Yup, I finished the paperwork, and guess what, I get to do it ALLOVER again. I have to put it online, I nearly flipped out when she said that and cried, I can't sit to do it, so Chris lovingly volunteered to try to do it for me.

My appointment is for March 18th at 9am.

Today the pain has been beyond control, I know my pressure is way up and if I had insurance, I would have called and asked for a spinal tap as soon as possible, it has been that bad today.

I am so tired of this being sick sucks.

I know God has a plan but its so hard. In the morning we are going to get my CPAP adjusted lets hope I can deal with the change 17 is almost double what I am at now.

for some odd reason the last post wont allow me to edit or type anymore, so I have to finish here, weird

After we get insurance through disability we are to aim for a spinal tap and probably a consult with yet another neurosurgeon to get a ventricular shunt placed where we can control the pressure.
We need a doc that isn't just going to wait til I go blind to do so though. I am tired of being sick all the time and the PTC is having just as strong of an effect on who I am as my leg is....but its been a year since I have been able to walk.

Headaches, Drs, Visits, and Disability OH MY

This morning was very hectic.
Today marked a new milestone, we are OFFICIALLY applying for disability.
I saw a new neurologist this morning. I liked him alot, he was very intelligent and literally seemed to know more about what I am going through than ANY other neurologist I have ever seen before. He didn't act like it was a big deal, and truly seemed concerned.
He is coordinating care with my rehab doctor to get me on disability and to get me insurance through the state. Once that is happening we have lots to do, but hopefully we can get this mess under control and FAST. I am tired of being sick all the time.

He is upping my Topamax from 50mgs a day to 200mgs a day for a month than 400mgs a day in a month.
That is where we can start because I get that from patient assistance.
After that we will aim for a

What a week its been

I know I have not been posting often this month, its been crazy, between school, doctors, errands, and homeschooling and studying and trying to squeeze in family time my schedule has been a bit tight.

Headaches have been bad several days, leg has been giving me grief too, but I am having the occational good day it gives me hope.

one of those is better

Lauren isn't still sick, thank GOD. I was afraid we were going to have to make a trip to the doctors, she has not been since she was 9 months old, she is never sick.

She was complaining about a headache and I was stressed out about her having my headaches, its been almost 20 years and I will not have my child go through what I have been though.

My headaches and back, neck, and leg have been killing me today.

We did get a new computer today. Its helped me be able to study for school, and catch up on stuff I am behind on.

study, rest, clean up after sick child, prop leg, take pain meds, study, rest, help sick child feel better, prop leg, take pain meds, try to take a nap whilst sick child naps...

I am stuck in a loop and its not working well. Lauren had 3 days of not feeling well, she scared me to death having a bad headache for two days, needless to say since my problems revolve around debilitating headaches, I was super stressed out... fortunately today she is feeling much better.

I have been studying and trying to stay off my leg but off my bottom too, sitting and standing are killing me, but laying down isnt any better.

Next step---

Today I saw the rheumatologist.

The pain in my leg has been absolutely unbearable lately, and she encouraged me to apply for disability and ssi as well.

Tomorrow I will call to check on my rehab appointment (and likely make it for next week instead of whenever it was)

After we get the ssi approval and medicaid that goes with it, she wants to send me to pain management since that may help me recover...I am willing to try just about anything.

She did up my muscle relaxant to 3x a day and she did give me 2 more refills. The headaches have been quite bad too, but pain management deals with ALL pain, not just the leg and back.

She told me there is little that Social Security can do to disqualify me since I cant walk or sit or stand without being in lots of pain.

No Insurance sucks

Well, I had my Neurosurgeon follow up today, absolutely nothing going to happen, I come back when I need to if my vision deteriorates or if my doctors say I need to.

He would like me to have gastric bypass, to keep working towards disability and full medicaid for my leg. He did write off my bill for today though.