Sunday, January 31, 2010

It's All In My Head.. Really

I have been living with chronic illness for a very long time, I don't remember when it all actually started, mostly because I have very little memory left. I was diagnosed with PCOS when I was trying unsuccessfully to get pregnant 11 yrs ago. I've spent hundreds of thousands of dollars on meds and Dr's and tests only to be told I may have Fibromyalgia, Arthritis, MS, or various other Autoimmune diseases. A few years ago after a really bad experience with a physician I gave up and resigned myself to a life filled with pain and a mystery diagnosis.

Over the last 8 months I have been having a lot of problems with my vision. I wrote it off to eyestrain, too much time on the computer and spending too much time crocheting. On one very rare day by myself I stopped by the eye doctor to get glasses. If you haven't been read about that day please look here

Any way I got most of my tests back last week and I found out I do not have Ms or Lupus which is really good news. The day after my birthday I got my MRI done and found out that I have a Brain Tumor, well not really a brain tumor a Pituitary Tumor. So needless to say I have been burning up google to find out everything I can. What I know so far is I AM NOT CRAZY, ok that's not completely true we all know I am a little crazy, just a different kind. I have probably had this for a very long time and it explains 75% of my medical issues. There are still more tests to be done. I am going to see an Endocrinologist to have a Pituitary and Thyroid panel done and at that point we will determine the best course of action.

One thing I found out is that this is one of the most commonly misdiagnosed illnesses there are, many people that suffer from Chronic illness actually have malfunctioning Pituitary Glands. I know this sounds crazy but when the doctor gave me the news I was relieved. I know that there is still a long way to go, but I have a chance now to get my life back at least most of it.

If you know someone that has been suffering with chronic illnesses, who feels as if they have lost their minds and are at the end of their ropes I encourage you to go to www.Pituitary.Org to see if they have possibly been misdiagnosed as well. It is my hope that if nothing else I can shed some light on this disorder and if just one person can get diagnosed early and not have to go through what I have this will have all been worth it.

I do want to take a minute to say thank you to everyone that has wished me well and encouraged me to hang in there, it means the world to me.

Saturday, January 30, 2010

Where has this week gone?

What a busy week this has been. There has been so much going on. Tuesday was my birthday. I spent it running Ro around to the eye doctor and dermatologist, not the most fun thing in the world to do, but it needed to be done and those were the available appointments so we took them. The day ended up great though my nearest and dearest all ended up having Chinese Food together and it was tons of fun.
I spent Wednesday in Houston at the Dr. and getting my MRI done after nearly having a stroke over the cost nearly a $500 copay that is ridiculous, but it had to be done. I was so irritated that I had spoken with the MRI facility on several occasions over the last couple of weeks and at no time did they tell me to bring my life savings with me to get this done. The thing is if I hadn't paid it they wouldn't have performed the test. It is crazy to me that a procedure can cost that much. I had to have with and without contrast of both the brain and orbitals, which is weird because aren't they in the same place? Anyway the total was 6695.00 for both. I am so grateful that we have insurance, we went without it for a while and basically we just did without health care and medications it's so terrible. I'm not going to get into a political debate, but my opinion is affordable health care no matter what. Hospitals and facilities should not be able to charge outrageous amounts for these tests and procedures, you shouldn't have to shop around for a bargain on your procedures. Anyway I'm getting off my soapbox.

I've still been working on the blanket and the weather has been awful. The kids have cabin fever there has been a lot of other stuff going on but that is another post. I'm not sure if its the winter weather or what but the weeks seem to be flying by. I can't wait for spring, I'm so ready for this weather to level out and the sun to come back out.

Monday, January 25, 2010

I'm Still Here!

I'm still here, I haven't gone anywhere, I can't believe it's been nearly a week since I posted last. I was doing so well and then I wasn't.  I've been  having another horrible flareup which not only affects my body but my mind.  I can't seem to get my thoughts together long enough to put them down in writing. 
I have also been crocheting, alot. I am working on Ro's afghan and what started as a small project has become something else. I don't want to give it away just yet. I am almost finished with it so I promise as soon as I am I will post the pictures. But for now I am going to keep crocheting and get this blanket done.  I only have 20 more flowers to do before I am done. I can hardly believe that a little over a year ago all I could do was crochet a chain and now I can do almost anything. When I started this I didn't think I would love it so much. I am so thankful for youtube. It has been such an amazing teacher for my learning process.  So back at I go before I have to head out and take sister to her first bass lesson. She's been wanting to learn and we found her a teacher so we will see how it goes. I am sure it won't be long before she has a garage band, in my garage I'm sure!

Wednesday, January 20, 2010

Tackle it Tuesday

Well, I'm late with my post once again.  My Tackle it Tuesday was obviously the laundry that was piled 10 ft high as a result of the Monday Meltdown.  I also had meetings with the twins teachers to discuss progress and nevermind the horrible flare-up that has only been made worse from my overdoing it on Monday. But I can say I did get over half of the laundry done and put up and by some miracle the twins have actually managed to keep their room clean for a whole 24 hours.. woo hoo!!

Tuesday, January 19, 2010

Meltdown Monday

I know, I know it's Tuesday but frankly I was too exhausted last night to get my post up. So here is the short version.

I love my kids and I have evidently loved them so much that I have made them completely incapable of taking care of themselves. They are little pigs. There room is a disaster area.  I have asked them repeatedly to clean it and sometimes they do ( their version of clean is hide everything so I can't see it and call it clean) or they complain that its just too hard to clean it. Really, isn't cleaning your room just making a mess in reverse? And you didn't have any trouble making the mess so I would have to assume that it is within your capabilities to do the reverse and clean it. Yeah well a Mom can dream right? So yesterday I donned the hasmat suit and decided that enough was enough and went in to help them clean there room. They are seven, at seven years old I had chores lots of them. Mine have very few until recently, anyway the me helping clean the room turned into me cleaning the room with the help of Little R who is evidently on a quest to be the best child in the world, while Middle K could care less he was off playing in the yard.  After several hours I finally called in the reinforcements - my bestie - Loco YaYa and we managed to get it completely knocked out. Now needless to say they have been informed that the next thing on the ground hits the trash but I have a feeling that one is going to take a few times to sink in.  So here I am after a very restless night feeling like I got hit by a train, but at least there room is clean.

Saturday, January 16, 2010

Stress Less Saturday

The weather is gloomy today, rain and clouds it's one of those days where you want to just stay in the house all snuggled up. So thats what I think we will do today. I am going to make it a point to not yell today. Maybe fold  a little laundry. Watch some movies and try to have a peaceful relaxing day. So in observation of my Stress Less Saturday I will be cooking something easy and not make a huge mess of the kitchen.

 So I am searching around for something yummy, if anyone has any suggestions let me know. Once I find what I'm looking for I will post the recipe this evening and let you all know how it turned out. I wish you all a Stress Less Saturday. Let me know if you have any tips to make your Saturday  a little less stressfull :) 

Thursday, January 14, 2010

Tasty Thursday

The kids have been begging for Tater Tot casserole so I guess that what we will be having it for dinner tonight. They love it, its simple, its thrifty and best of all its Tasty! So I thought I would go ahead and post this recipe for y'all to share with your kids.

Now this recipe comes with a disclamer:

Warning this Tater Tot casserole that you are about to make is sure to be a hit with your kids so if you don't want it to be a repeat dish, don't fix it!

I hope you all enjoy it as much as we have.


1 can cream of mushroom soup

1 bag tater tots

shredded cheddar cheese

1 lb of ground hamburger meat

serves: 6 or 7

Brown hamburger meat. Add cream of mushroom soup and stir together continuously.

Let simmer on low heat for 15 minutes.

Place mixture in the bottom of a casserole dish. Lay tater tots neatly on top of the mixture.

Place in oven on 350' and let the tater tots brown.

Sprinkle with cheese; melt it in the oven

* I usually double this recipe because everyone always comes back for seconds.

Happy Cooking!

Wednesday, January 13, 2010

Wordless Wednesday

Tuesday, January 12, 2010

Post-it Note Tuesday

Saturday, January 9, 2010

Heading down the path...

So the hubby and the bestie managed to bully me into going to the Dr. Friday. See I had come up with at least 800 reasons why I wasn't able to keep my appointment. But I sucked it up and went.

The  goal in seeing the MS Neurologist was to rule out MS. Well after 5 long hours of rediculous tests I was instructed to leave to go see another specialist.
Now don't get me wrong this Dr was very wonderful. Dr. Rosa Tang is an optic neurologist in Houston she is amazing. She sent me over to see Dr. Susan Wittenberg  and Dr. Prader who are optic immunoligists. Dr Prader ran me through some tests then an optic ultrasound. This is to determine if the occular muscle is inflamed.

Ok, so I'm thinking that is so weird how in the world do they do an ultrasound of your eyeball. Well even though they numb your eyes its pretty much like having a golf club stuck in your eye. So anyway Dr. Prader says the right eye is mildly inflamed and then he goes to the left eye and after shoving the golf club in my eye like eight times say "Oh wow can you hold on a minute this thing is huge, let me go get Dr. Wittenberg ( who by the way isn't seeing patients at the time but promptly comes in to see me) we talk for a short bit and she is ordering a ton of blood work and x-rays. Now Dr. Prader is one of the sweetest Dr's I have ever met he is very nice and very reassuring, however having a Dr react that way is always mildy disturbing.

Ok so here is what I know so far, most likely I do not have MS. Thats the good news. The not so good news is I definitly have one of the 800 needle in a hay stack Autoimmune diseases, the top of the list is Lupus. So we will see and I guess hopefully before too long we will know what the hell is wrong with me.

I went back and picked Roy up from work and we headed home my head pounding and I was feeling pretty much like my eyeballs were going to pop out of my head. We talked a lot about what we're facing and here's my point of view " It is what it is" , as much as I have put this off  it is time after 10yrs to get the bottom of this. I know that all of these diseases can be managed but I am not niave. I also know that there is a chance that I could die. The thing is we are all going to die at some point. Of course Roy said I probably need more life insurance because all we have is enough to bury me and my response was " No, you know I want to be cremated and divided up so everyone can have a little piece of me hanging around, he then responded with " I need one of those things that I can put on my key chain so I can carry you around with me everywhere I go, and I of course laughed my ass off and said "omg that is a great idea and then everytime you start to do something stupid you can imagine me still there yelling at you and telling you how to do it right" which was then followed with "yeah and I could have WWSD put on it" (what would Steph do) ok I am pretty sure a lot of you are thinking is she really joking about death, does she really take it that lightly.  My answer is yes I am joking and laughing and no I don't take it lightly but, IT IS WHAT IT IS, and I will not spend the rest of my life crying and feeling sorry for myself. Am I pissed?  Thats putting it mildly, but not becuase I'm sick, but becuase I don't want the people who love me to have to go through this. I have been there, I watched my grandmother deteriorate and die way too young and it was horrific. She didn't handle it well, she gave up and I never forgave her for that. I wanted her to fight until the very end but she didn't. I will fight, I will laugh until I cry and I will make inaapropriate jokes and remarks in order to cope with all of this crap. But the one things my kids will know is that I won't give up.

**Side Note I stopped in the middle of writing the blog because Dr. Tang called me  ( at 5:30 on a Saturday evening) to check and see how I was doing and if I got to see Dr. Wittenberg. I told her about the visit and that I have to go for more tests and she was very concerned, I told her my eyes were killing me and I look like Quasimoto and she said to hang on while she called in a prescription to my pharmacy because she didn't want me to suffer until I got back to Dr. Wittenberg at the end of the week. She then told me she was going to order me an MRI for the same day so I wouldn't have to drive all the way to Houston more than once. I thanked her repeatedly and then explained that I was confused because she is after all an MS specialist and she is sure I don't have Ms so why is she still checking on me and ordering tests and she said that MS is just one of her specialties and that she will continue to work hand in had with Dr. Wittenberg until they come to the correct diagnosis and can find me a specialist closer to home. Now I don't know about you but I can honestly say that at this point I could not be more impressed, I have never had a Dr. go to such lengths to check on me or make sure that I was being cared for properly.

So thats the long and short of it, I'm not dying today, and hopefully won't be any time soon. I still look like Quasimoto and feel like I got hit in the face by a train but I am here hanging in and bound and determined to continue to do so.

Thursday, January 7, 2010

A Little More About Me

Ok so Trisha over at Mom Dot has presented us with another great idea. Introduce Yourself to Your Neighbor Day. Sounds fun so I am in.

Hi my name is Stephanie ,
I am 37 for a few more weeks (except all of my amazing coffee mom friends who just happen to all be 33 and 34 have mandated that I get to be the same age as them until we can all be 40 together) So scratch that I am 33 ( humor me)

I have three kiddos Rorie 10 going on 15, Keegan my crazy little man 7 and his twin sister Rylin the queen of all things.


I am married to Roy and have been since 1997 and will continue to be forever ; cause lets face it no one wants either of our baggage.. Just kidding I am head over heals in love with this man that makes me happy, crazy, angry, crazy, takes wonderful care of our family... did I say crazy.

I am one of the few lucky people in this world who can say I met my Best Freind Soul Mate, Amanda who is the amazing, dedicated, hysterical, funny, dependable anchor in my sometimes wobbly foundation 11 years ago.

Through various life challenges and all we have ended up rasing our combined 5 kids as one big family.
I love all 5 of them as if I gave birth to each, they make me laugh, cry, scream, giggle and want to pull my hair out a lot of the time. But what kids don't.

I am addicted to Diet Coke, I love Cheese-Its (to the point that I hide them from the kids so I don't have to share)
I love dark chocolate, I am scared of the dark, I love scary movies but not horror movies, action movies are my favorite.
I love to shop, but not just shop bargain shop, nothing gives me a bigger thrill than finding something I want for 70 - 90 % off.
I love to cook , sew and crochet.
I confess that I am a Twitterholic and I am loving the blog world that I have been introduced to.
I have two dogs Buckley and Ella both labs. We just moved to the country and I am loving every minute of it.
I have a chronic illness, but I am bound and determined to kick its' ass one way or the other.
So thats just a little more about me.

Thankful Thurdsday

Dear Sweet Children of Mine,

Thank you for finally for listening to me. Thank you for gathering the laundry and trecking to the washing machine for me. Thank you for taking the laundry and inserting it in the washing machine. Thank you for so thoughtfully adding the soap and starting the load. Thank you for then putting those clothes in the dryer. I so appreciate all of your help. I know that I have asked you a million times to do this and I truly thank you for do this menial task for me without my having to ask. And because you were so thoughtful I will overlook the fact that you missed the blue crayon that was in one of your pockets and ruined and entire load of clothes. And last but not least thank you to the Laundry gods that this load only consisted of towels and play clothes.

Wednesday, January 6, 2010

Wordless Wednesday

- Posted using BlogPress from my iPhone

Sunday, January 3, 2010

Looking Forward

Here we are, a new decade, wow it's funny how time slips away so quickly. I find myself reading up on all the blogs. I know that it's that time..New Years Resolutions but I don't find myself really wanting to make any. It has become more and more difficult for me to make plans and look ahead too far. As most of you know I am hinging on the edge of an MS Diagnosis, I have been avoiding it as much as possible. So I am guessing if I were going to make any resolutions it would go something like this.

1. Learn to take better care of myself.
2. Stop avoiding the inevidable face my illness head on and seek the proper treatment.
3. Work on my relationships with my family and friends.
4. Give the kids more boundaries, stop letting them run the house because I don't have the energy or ability to battle with them.
5. Continue to laugh every chance I get, even when I feel like crying.
6. Appreciate each moment as much as possible.
7. Learn to ask for help more often instead of feeling like I am the only one that can do anything.
8. Even if I don't feel like it force myself to get out and do at least one outing every month.
9. Stop trying to be superwoman.
10. Realize I am not in this alone.

I have been very fortunate. This move has opened my eyes so much.  I am surrounded by wonderful friends and an amazing support system. It is still hard for me to ask for help but luckily I have great friends that don't require instructions, they just jump in and start helping whether I want them to or not.
I am blessed and I know it . I am just having to learn to step back and let go and realize that somethings can wait, everything doesn't have to be perfect and I have so many people that are here to catch me if I trip, stumble or fall.