Wednesday, February 22, 2012


February is a short month, but WOW where did it go?? I've been running my butt off EVERYDAY going here n there for Ms Avrianna's activities and doctor appts for Danny n myself would "think" I would be shedding off the butt ~ NOPE. This Monday we went down to CHOW for Danny's Orthopedic appt. I was going to cancel it, but I'm glad I hadn't .... I TOTALLY Jinx myself on the last post as after I wrote it down Lil Man MUST have gotten access to it and read that he was doing well. So he decided to turn it up alil bit ....He's been teetering with respiratory crud, nothing full blown, but alil more attention is needed to be given. I just did a spit collection this morning to be sent to be cultured, just to stay ahead of the game, in case things turn. We've also needed to put his leg brace back on due to more discomfort :( While we were down in CHOW for xrays to monitor his VEPTR rod growth I mentioned that his leg/knee is STILL bothering him so they added addl xrays to take a look again. Unfortunately there still is no definite for why Danny's knee is bothering him. I got a "Keep doing what you're doing, as long as it helps" speech. It's alil frustrating, but at least we were able to get it looked at. Theory is that in the OR room, with his gall bladder removal, they moved him, forgetting that there is no hip on the right side and traumatized it in some way. BUT as I (and alot of you reading) know....what happens in the OR ~ Stays in the OR, so it's just speculation.
I know I've shown you this before, but I'm just in amazement at the correction.
Here's the before the VEPTR xray next to the NOW xrays ~ not only is the correction impressive but look at ALL that hardware (Trache, med port n cath, 2 VEPTR rods, G-tube, ITB pump n cath)
I thought this angle was neat.....they normally don't get his head in there. I know I'm weird ~lol
Danny is scheduled to get grown out again on April 24th. That will work nice as we are planning on going to Florida for spring break, so alil nice R&R in the sun and then we'll be all refreshed for surgery.
After Danny's appt we made our trip to The Cheesecake Factory........YUMMY, that makes it SO WORTH driving down! Unfortunately Danny's dysautonomia "episodes" are back and in full force....even in a restaurant they pop up. At least it looks as if he is having a great time. Again I know I'm warped, but how can you not smile seeing him smile like that. Even if it's coming off an episode :) We are going to see his Neurologist in 2 weeks to go over more options to see if we can help control this NASTY CRUEL disorder.Danny got his new Cascade AFO's last week ~ Avrianna picked out the patterns....she's so proud :) I think they turned out pretty cool. I have to admit I was alil concerned with what all the colors were going to look like, but she did good!
I think we have the start of a Halloween costume cane and Danny's old AFO's , I can work with that :) Now maybe a house coat and a wig of grey hair, LOLI laid Danny on the floor the other day and Gunner made himself very comfortable with his BFF. I have to say Gunner is WONDERFUL with Danny.....Danny is HIS person.He is Danny's protector ...... It just makes me SMILE :)

Ms Keren and Avrianna are busy getting ready for St Patricks' Day and the art projects are in full swing. I can't wait to see what they are going to do. All I know is they looked like Ogers with all the green paint on their hands.
My Angry Bird ~ All bundled up to visit Dr Kasper for an ear check up.
Last night was pictures for the Wave swim team. I can't wait to see how they turned out. There was about a 45 minute gap between her individual pics and the Group Team photo ~ I couldn't keep her out of the water. Her dive team was practicing at the pool during pictures and next thing I knew she was in the water. Oh well, why not have wet hair for a swim team picture, right? At least her individual picture her head was dry.
This girl has got me running crazy to get her to her after school activities. Well I guess most of it is my fault for signing her up, but she is enjoying it and it keeps her occupied it's better other then sitting around home being a bump on the log. I'm really glad she is so active :) She has Dive every nite after school from 4-5:30, then Piano on Mondays, Art on Thursdays, and then throw in a school function of skate nite or Girl Scouts on top of it which makes us busy bees in the evenings. Next fall she I believe she wants to do BOTH dive and swim so I think she's going to have to chose what days she wants to do what as it will be too much to do both in one evening. I'm just tired thinking about it.
I am getting geared up for a Wildtree Freezer Workshop here at the house on Saturday. I was alil disappointed in the turn out, but non the less we WILL have FUN! We are getting together and prepping 10 freezer meals with Wildtree products. I LOVE Wildtree and what better to cook with them, with some of your girlfriends, and I'm almost POSITIVE there will be some cocktails too. I will DEFINITELY be having another one of these later this year. I think it's going to be a great time, PLUS I will have 10+ meals already done and in my freezer. I can use that will all the running around we do. I am also planning a Game nite on St Patrick's Day with a few of our friends. Just alil friendly competition and again cocktails, but I'm sure these will be green. Do you see a common denominator here?? And Yes I do like to plan get togethers. I'm really looking forward to the surprise party at the end of the month.....I hope I can pull it off (you never could be you) LOL.
Thanks for stopping by to check on us!

Monday, February 13, 2012

I Matter

WOW ~ who needs to go to therapy when I have YOU guys! I'm truly blessed to have a great support system. I can't express how appreciative I am to have my blog family. You guys are amazing! Even if you haven't "reached out" I can SEE that you care, by all the visits my blog has gotten. I don't know why I strayed away from here as I know blogging is MY get it ALL out there ~ the good, the bad AND the Ugly. It's MY outlet and a place where people can go to see what we're up too, feeling, and going through. A place I can write down everything that is spinning in my head. Not only to just capture it (so I can stop thinking about it), but a place I can also hold myself accountable.

To show someone else that may be out there that they are not ALONE. I'm NOT perfect ....

I'm just ME!

Funny how I don't look at or treat myself the same way I would others. The drive I have to take care of my kids and give them the best quality of life is my STRONG point, don't mess with this MOMMA BEAR, but when it comes to me.....well the spark is not there.


I understand that there are things that I just have to settle with with my life, but then there are others things that I just NEED to do. I need to push myself to BE out there. I need to be honest with myself.....I guess I've been in denial and suppressed many of my "feelings", I've coasted along, numb of my emotions. I put a smile on my face and went on as if life is rosy. So was I crazier to make things looks ok, or am I nuts now? I'm struggling with what's the right way to "feel". I look back at what I wanted for my life and I just wanted to be "simple", a wife and mother. My life should be GREAT, right? I'm married, I have two wonderful kids, a beautiful house, I don't have to worry about finances BUT here I am..........struggling with myself.

Filled with WORRY and ANXIETY!

There are SO MANY things that are out of my control. What in the hell makes me so damn not only "endure" all of this, but to be the one to be in "control" of it all too. Am I really good enough? Am I strong enough? Why ME? "Life" hasn't been the easiest and yet I've pushed through....... so why do I KEEP getting MORE? What a cruel joke....lets see how much Lori can take before she snaps!

Will she?


So after my last post I really didn't know what I was to do or where I needed to go, but I knew I needed something......ANYTHING! I am floating out of reach with myself and I just need to get grounded. Even though it was hard to admit and "expose" my feelings last post I felt this awkward sense of "help" after hitting PUBLISH POST. That was my first acceptance to change ..that I needed to come back to ME. I NEED to not only treat MS, and take care of the kids but I need to treat and take care of MYSELF too. Why do I always sell MYSELF short? I know it's going to be a long, tiring, and forever going trip but I NEED to do this. I realize it's NOT going to be easy and some days I will feel utterly defenseless and defeated, but I will continue to push through.

Lately I've come across some weird "encounters" with the "media" (aka tv, book,s and radio) as they seem to know what I need. Let me explain (I'm not TOTALLY NUTS, I swear)....right after I posted my last post I sat down to watch some TV. What was on? Dr Oz, who had Montel on the show, talking about his MS treatment that has helped with his energy levels. Well wasn't that Cool ... I need that !! I was excited - For the first time in a while, I was excited! I went straight to my computer and started to print off all of his advice. I think it's a START - it's right in front of my face, how much more clearer did I need the message to get moving. It was a wake up call. One of Montel's statements was, "it was time to get busy living instead of getting busy dieing". In not so many words I say this all the time towards Danny's quality of life so why didn't I connect it to mine? Guess I just needed to hear the words.
Here are the linkes to the show:

The next morning while I was getting ready these two songs play back to back and I had this ah ha light bulb moment
"Who Says" by Selena Gomez -

I SAY!! It's up to me! No one is going to do this for me, so I Say it time to get out of this funk!

"There She Stands" by Michael Smith

I know this song is about the Statue of Liberty and how she stands after all the diversity, but I can relate. I WILL stand!
I bought some books to read on MS and the first one I started is "Awkward Bitch" ~ it's wonderful. This woman is heart felt, raw and TRUE! She calls it how it is....MS SUCKS!! Not only is this a painful physical disease, but the emotional craze is also very very REAL! Not knowing what the next day, hell the next minute, will bring, is very SCARY. Not to mention enduring daily pain and vision issues is enough to send anyone to the NUT house. Depending on the day I even feel as if I've already entered the funny farm, when I look at things and it looks like I'm looking at them in warped blurry mirrors.... I can only imagine the effects it takes on my "abilities" of which I either don't notice or will tend to ignore. I've acknowledge that I have MS but I haven't excepted it yet....does that make any sense?
There's been a lot going on with me & Danny, many would say this....whatever I am going through, is justifiable. BUT in my eyes it's not me, it's not ok, and I'm just trying to figure it all out.
The kids are doing well. Avrianna is LOVING dive and continues to do wonderful in school. Tonight she is on a date with her dad they went Bowling for a Girl Scout event. I hope they have a blast. Danny is (on the Danny scale) doing good. He's been teetering with a respiratory funk not a full blown illness but just not his "normal". He's been having A LOT of neurological "episodes" again and we are waiting to hear back from his neurologist on what we should do. The pain in his leg has been doing much better and for that I am thankful. Seeing him cry EVERY day was a killer, I'm NOT going to lie. Dan has been a busy man, I know BIG surprise. The newest Clothes Hamper Coin Laundry is due to open the end of the month. It's located in Oshkosh on Jackson St. Things are progressing nicely and the store is looking GREAT!
Thanks for checking on us!!

Wednesday, February 8, 2012

Just keep Swimming, swimming, swimming!

I'm afloat in large, deep waters lately ... some days wondering if I have the strength to stay afloat or am going to sink. I'm stuck in a rut and it SUCKS! I can't understand where or why this has reared it's ugly head, as it's not me.... I'm distant, tired, agitated, anxious, it's hard to concentrate, I'm just

* HERE *

with no drive or care to do anything. Honestly it's difficult to even blog these days...I know right? Right there is a RED flag. It's really hard to swallow personally, I'm always "in control"....or has it just been a front and I'm really spinning OUT of control? I'm questioning a lot lately.....everything . Why can't I just swim to shore and get back on my two feet. It shouldn't be this difficult? But right now it is......
I know right from wrong and the way I'm feeling and thinking lately is just


Yesterday I had an appt with my neurologist to follow up with my MS and then to have my monthly infusion. I knew I had to say something to her, despite the fact she might throw me in the nut house if I do talk, but I'm


and right now the shoreline is nowhere in my I needed her to know I'm NOT me! I know if I can't be honest with her then I'm not being fully honest with myself. I'm scared to all hell that this is something that I won't or can't get a handle on. Am I


What's wrong with me? Why can't I get a handle on this? All the symptoms I'm having could be progressive MS or anxiety n depression but from where I'm sitting I'm not sure which one I'd rather be. I don't want to "feel" like this for the rest of my life.


I'm a work in progress and ................... I WILL keep swimming!