Sunday, August 9, 2015

There's Something...

There's just something about a man... who in the midst of listening to one of his favorite bands... starts tearing up.  I'm hearing the lyrics, I know what they mean to him.  I know what they mean to me.  It's our life...our soundtrack - and behind the tough exterior he's thankful, blessed and remorseful.  I see it, even if he doesn't.  I see it when he looks at our sons...or at me.  THIS is why I love him...

..even if he doesn't know the lyrics and tries to sing them anyway.

Monday, March 16, 2015

MS BLOG: Overactive Bladder

(Ready for the strangest intro to a blog post ever?)


Ever since I was little, I remember using the bathroom very quickly - I peed faster than all of my friends.  It was by no means ever a competition and it was never intentional to be a "fast pee'er", it just happened.  I remember there always was an immediate urgency when I did have to go and if anything held me back time wise I would "lose the game" (as my current friends affectionately call my issue).  My dad used to tickle me a lot.... and I hated it because I'd have to pee so badly and half the time I never made it to the bathroom on time.  He was an awesome dad but this was one of my worst life experiences... until the issue followed me into my teenage years and now into adulthood.

In my teens I handled it better but it happened more frequently. I never saw a doctor for it at this point and I don't think anyone really knew I had an issue besides a couple of friends who experienced it first hand when I had to borrow a hooded sweatshirt to cover my wet pants or to borrow a change of clothes.  I remember a specific period of time in high school and I had gone to a carnival in the town where my high school was.  I had gone with friends from another school and we were on a Tilt-A-Whirl and I laughed so much. It was awesome... up until I "lost the game".  I had to borrow a friends hooded sweatshirt, carefully tied around my waist (sleeves up front to cover anything else ) and spent the rest of the night out of commission because I couldn't chance feeling any wetter and there was no change of clothes and no bathrooms even remotely clean enough to fix my situation.  Thankfully, my friend was incredibly understanding and helped me make a swift exit.  Similar situations happened several more times through high school and college.

Once I was out of college , I had less issues... then I got pregnant and had a baby.  Something they don't warn you about post-baby... your bladder just has no tolerance.  Mine was exceptionally bad because of my issue.  I "lost the game" driving home with my husband at the time... and I felt terrible.  He was really supportive but he knew something was definitely wrong.  I didn't have insurance at the time so I didn't go to the doctor.  He spent a good portion of our marriage trying to help me with this but it never worked out.  Enter, second baby 3 years later.  A 9 lb 7 oz baby who destroyed my bladder. If I didn't have tolerance after baby 1 then by the time baby 2 rolled around my bladder had no hope.

By this time I was divorced, new group of friends I had met through AOL.. but offline - and they were also very understanding of my issue but it always became a joke because I would "lose the game" at the most inopportune times... every time.  It was fine, silently sad about my issue but I was always taught if you can't beat 'em, join 'em... so I laughed right along, red-faced.  I always admitted "losing the game".  (Note:  This group of friends was also very understanding and would help "cover my ass" if I needed them to)

I finally did go to a Urologist in West Virginia through CAMC and I was tested for Overactive Bladder.  I drank tons of water and then peed into bowl they had (ya know the kind they rest on a toilet after you have surgery).  This contraption had something to measure flow and I had a monitor to test whether or not I was really emptying my bladder. It turns out that I do pee quickly, but when I am done my bladder is completely empty.  No answers there.  The worst part of being tested is when I left.  Less than 5 minutes after I had left that Urologist, walking back to my car, I had a sudden sense of urgency and "lost the game" immediately following that sense.  SOAKED.  I was soaked... all the way down my pants, standing in a parking lot outside of the hospital post Urology visit ... and I couldn't go back inside.  I was mortified and I just cried.... all the way to my car.  I couldn't turn around because my pants were soaked, I couldn't walk to the Urology office because it was on the 4th floor of a very busy hospital and that meant passing a ton of people who would undoubtedly laugh, smirk etc.  So there I was, grabbing a towel out of my trunk, placing it on my drivers seat, getting in my car with the door shut and car still off and I cried... for a long time.  I felt so alone, I had just been to a doctor who saw no issue with MY ISSUE and I couldn't turn around.  If there had been a moment where I should've turned around, I'm sure that was it but I couldn't.  I was stuck... sad... wet...uncomfortable. I eventually drove home but I was a mess of tears by the time I got there and was able to change. I haven't been back to a Urologist since.

Here I am now, 34 years old still struggling with this issue, diagnosed with MS 8 years ago, had baby #3 2 years ago. = BLADDER POOF.   I have an incredible group of friends... and when I say incredible... they are hands down the best people I've had in my life to date. I'm "losing the game" more frequently now, have become more adapt to doing so and I usually have precautionary methods (extra pads, towels, blankets, change of clothes etc) available.  There have been a LOT of times where I didn't have anything for precaution and this group of friends, without hesitation have been there to "cover my ass" when necessary. I can't explain in enough words how sad I am that this happens to me, and how terrible I feel to even ask my friends to help, or how nervous and stressed out I get when it happens and I don't know how to let someone close to me know what is going on.  It's a terrible secret, a terrible feeling I wouldn't want anyone to encounter.  I mean, I'm 34 and I frequently lose my bladder at the smallest thing.  Laughing is the biggest culprit... coughing, sneezing.. the standard.  It's not even a sensation I get to urinate anymore... NOTHING. It just happens.

Last week I was talking to my incredibly understanding boyfriend about something that had happened to me that same week and I was on the toilet, in the bathroom waiting to pee... I knew it was coming, we were laughing.  It did.... but then it didn't really stop.  Every minute or so I was just ...leaking... no sensation ...nothing.  Very quickly our laughing turned into tears when we both realized at the same time that this was getting serious.  What's going on with me and has been going on with me isn't anywhere near normal. He made a suggestion to buy Depends.. which at 34 blows my ever loving mind... 34 with Depends.. NO. But in all honesty, it didn't seem like a horrible idea.  It would mean new precautionary methods but it would also mean no wet clothes, no proof that I had "lost the game".  We're considering it...

There was also talk with friends about the possibility of a catheter...

I'm planning to explain my issue in detail to my neurologist next visit.  I'm pretty sure what's going on with me at this point, to this severity has to do with Multiple Sclerosis. Actually, a week or so ago I saw an article on healthline.com that said, "Bladder Drug Re-Grows Myelin, Could Help Ease Multiple Sclerosis Symptoms".  PERFECT! A bladder drug that could help with my issue AND help ease my MS symptoms.  If that wasn't an article for me, I don't know what was.   It was after reading the article I realized I wasn't alone. Other people with MS experience overactive bladder as well... and that there could be some hope.  The article stated that researchers are "cautiously optimistic".. and so am I.

I would love to be free and clear of this issue...it would make a monumental difference in my life.

Link to the article

To my fellow MS'ers... keep fighting!


Why Do I Blog?

I was asked recently by my boyfriend (of 8 years) "Why do you blog?" - He asked me in all sincerity and I think it was more to bring about a response that included me updating the blog I started before our Disney trip last March...

Oops.

Now, I answer for a different reason than Disney updates, though I will definitely have some of those since we're Annual Passholders (YAY!!!).

I blog... very simply because I forget.  Because I was diagnosed with Multiple Sclerosis in 2008 and since before then even, my memory has gone to shit. I used to be an ace at remembering things and I can still memorize numbers like a champ - nearly a photographic memory for numbers (No clue why, I HATE math...ick)  At work I'm constantly taking notes and at home I don't so I forget things.  Blogging was supposed to be how I remember things.  I forgot to blog too.  See my dilemma? I plan to pick it back up though, if I can remember to do so.  There are so many things that happen to me MS wise that I'm sure someone else with MS could relate to and there are so many things I hope someone can relate to because I need advice on coping methods. I'm trying... and I guess that's a "new" start for me.

I can't guarantee my blog will be long and drawn out and even though I'm writing what I'm thinking, there sometimes isn't any real grammatical context to what I'm saying. I run off on a tangent.....
I have MS and I there is a grey area... a blank grey area. So I'll forget in an instant what I was even saying.  It's scattered.... I just have to get my words out. (Wonderfalls reference anyone?? )

It won't always be about shiny, happy, pretty things (like my kids or Disney).  There's a lot here... a lot we deal with as a family.  Addiction, depression, Multiple Sclerosis, a child with CHD, divorce, a 16 year old love story - it's all stuffed in one little house in Florida... one family of 5 that struggles but loves. It's ... us.


The Many Faces of Blake Part I

Just a quickie post for some pictures of Blake I caught while he was messing on my laptop.  His expressions melt my heart.


Caught. That's it.

This is a focus thing...

<3

Very close to being one of my favorites EVER.

"Oh Mommy you're so silly."


ALL 3 of my children have a picture of this crooked smile.




So serious.

Conor thought it would be a great idea to see what Blake was up to.

Cute, right?


Tristan vs Fanatics

I had to work on a weekend a couple of weeks ago and asked my 9 year old if he wanted to come with me.  Without hesitation, he of course said yes.  He has been there before but this one seemed a little more special.

Back Story:  I am a Senior Quality Control Coordinator for Fanatics Apparel - which is Fanatics branded apparel/Box Seat Clothing Company.  Fanatics.com ... blah blah blah :) I work in the Production Art department mainly which means almost everyone I work with directly has been to an art school of some type and are graphic designers and ridiculously awesome artists. I encourage Tristan hanging out with them because he also loves to draw and deal with design - my job is cool.

I snapped a few pictures of him...

Showing me his masterpiece - above the family are balloons. 

Our turtles at the time

Our family

Can't forget our furry family

Meet Jake - one of the most creative people I've ever met.  He drew Lego Batman for Tristan who was VERY surprised

One happy kid

In the zone

Emmett

Practicing away

I loved this opportunity he had and I hope there are more in the future. 

Love,

Apology & Oscar Update

I am the absolute worst at being consistent with a blog.  Between life, kids, MS and work things have been just insane since my last update.  I'll try my best to re-cap...



We got Oscar back on January 27, 2015.  He was gone for a VERY long time and it happened by chance really.  I was searching on petharbor.com - a site I had been frequenting since he went missing.  I checked pretty regularly but around mid-January I really was losing hope.  Well... one day at work on a break I decided to check again and lo and behold I saw his picture.  I swore up and down it was him, I verified the picture (which was not great) on their site with pictures I had of him. I asked my friend Marissa, who had been around Oscar quite a bit to verify and she was pretty certain it was him as well. So I called the shelter, begged my boss (who loves cats, he has 2) if I could leave early because the shelter was closing at 4:30 and I couldn't begin to fathom leaving Oscar there one more night, especially if it really was Oscar.  I got approval to go, Marissa came with me and we went to downtown Jacksonville (almost Riverside) to check it out.

We showed up at the shelter, I told the lady at the front desk I was pretty sure #XXX-XXXX was mine and she seemed hesitant.  She asked if I knew he had feline aids and I said "No", but I was able to confirm other information about him.  She called for another worker to escort us back to Oscar and into a very small room.  As soon as I saw him, I knew it was him.  I think he knew it was me.  The workers around asked if he liked to have his head pet, and I said that it was one of his stand-out traits. Oscar was so content in my arms and I cried like a baby.  I don't think I realized how much I had missed his adorable face.  The doctor came in to confirm a microchip - I said that it was put in when I got him from the Humane Society 2 years prior but she said they couldn't find it.  She proceeded to check for the one they put in him when he came in 2 weeks earlier and couldn't find that either.  Then... there was the story.  Apparently, Oscar had traveled to the West side of town which is by NO means anywhere close to where we live (and requires a trek over a bridge), so the shelter workers were still hesitant to confirm if Oscar was in fact Oscar. It didn't matter to me though, I knew it was him.  I paid $20 for another microchip and signed papers to "re-adopt" him for a second time and we were on our way home.

He was diagnosed with an Upper Respiratory Infection and Feline AIDS (which I assume is from another cat he encountered in the 2 months + he was gone).  He's been home for almost 2 months now and he's doing better.  We've kept him in our bedroom because he still doesn't sound great and we have been trying to keep him separate from our other cat, Conor. Conor and Oscar know eachother is there and they spend nights (sometimes all night!) pawing at my bedroom door.  Conor isn't a super healthy cat though and we don't want to risk Oscar passing Feline AIDS to Conor... I'm hoping I can ease them both into a comfortable living situation again.