Neurofibrobromatosis Awareness Bracelets

I was surpirsed by FedEx today...My bracelets showed up early! I'm excited...they look pretty good! After my issues with this company, I was delighted when they offered to replace the WHOLE batch....and toss in a few kid sized bracelets.

My intentions with the printed bracelets was to get the message to "pop". The engraved ones were great, but I was afraid the message didn't show up enough.

Sadly, the printed ones faded within days, and I was left with many unhappy folks. I apologize for this, and this is why I am offering to replace any of the printed bracelets upon request.

The "new" bracelets have a slightly different look to them, but I really like them!

If you would like to order NF Bracelets, there is a link to the right (please be sure to pay attention if you are ordering internationally.

If you ordered the printed bracelets and you would like a replacement bracelet, please email me directly at kristi.hopkins@gmail.com

I am grateful to 24wristbands for going the extra mile and making a very happy customer.

We now have KIDS SIZED BANDS (limited number) so when ordering, please leave a note through PAY PAL, specifying the size of bracelets you would like!

Thank you for supporting Neurofibromatosis Awareness!!

THRIVE ON!

Anxiety and Depression

I rarely blog about anxiety and depression, not because I don't experience it, (because I do) but because it can be really hard to talk about.

Growing up, I knew my mother was depressed. She'd even tell me...."Leave me alone, I'm depressed!" I knew when to walk the other direction and when it was "safe" to be close. (which was a rare thing)

My mother does not acknowledge her Neurofibromatosis, nor did she ever have me tested, even though I had all the ear markers for the diagnoses. It stresses her out to talk about it, so she avoids it.

I learned from both my parents, to avoid talking about what is bothering me to the point of shutting pretty much everyone out. I build a wall of protection around me, so that I won't have to deal with what bothers me, while inside, I am screaming for help.

Depression can be a scary thing, if not acknowledged and treated properly. I've gone years and years denying the fact thatI had issues with this. Claiming that I was the 'tough one' and could handle anything. Boy was I wrong.

After my diagnoses with 'NF', it was like someone opened the flood gates, and I had no other choice, but to face all the pain head on. However even though I kind of knew what to expect, I could never prepare myself, for all that NF was going to throw at me.

There was so much more that NF brought with it, that I now had to deal with. I wasn't ready for that. I wanted to crawl back into my shell and hide....afterall, my mom was doing and she seemed to be getting by okay. (yeah right)

Neurofibromatosis and depression, go hand in hand. There is countless literature backing up that those with Neurological disorders, also suffer from bouts of depression....But there is NOT much information on treatment for it.

MY mother is now in her 60's. Still depressed. Still angry. Told things like "You need a hobby, to help with your depression." Some treatement, eh? May work for some, but for those who are truly suffering from deep anxiety / depression, this won't even begin to touch the problem.

So how does it work? How does one overcome this? For ME...I have stopped justifying my depression as a natural side effect of NF , and chosen ways to THRIVE instead. Thriving doesn't mean ignoring the problem, but it DOES mean focusing not on the problem, but on the solution.

NF creates problems of all sorts. Heck, LIFE creates problems of all sorts, including depression of varying levels. What are YOU focusing on today?

CHOOSE TO HIDE....or CHOOSE TO THRIVE.

Hmmm I wonder which one I'm choosing today?

What's Up Wednesday

Today we meet with part of the team that will be involved in Bailey's surgery. I was impressed because the insurance has yet to kick in, but the doctors wanted to meet with us anyway...just to get things rolling.

I have the records, and copy of the MRI, so the Dr, can understand what is going on with Bailey.

I will take just Bailey .... It's important that we have this time alone.....We can talk to the Drs, without kids running the walls. :)

I am wondering about my own MRI, that was done just before our move. My Neuro in Spokane is just horrible and I am glad to be done with her. She sits in her million dollar office building and has no clue about Neurofibromatosis and how is affects people.

I am tired of being treated like my pain is not real. My head and brain issues have really bothered me over the last 2 yrs....and this medication does not work. Is it too much to ask, to just have a doctor make me feel better? Isn't it their job?

Acceptance

I haven't been blogging the way I used to. I know this, and think about it all the time. I think "When things slow down, I will put up a post." HA! In a house with six kids, things NEVER slow down!

This move to Denver has been awesome so far. We attended a great church, that felt "right". I always worry when I meet new people....I wonder, "Will they take one look at me and shy away?" "Will my appearance affect my friendships?"

My security level, with my appearance is often times at a low. The tumors growing on my body and face make me feel horribly self conscience. So I try to compensate, this by gravitating to children. At least THEY aren't as judgmental.

My friendships with people have not been the best....I have lots of friends on-line, but when it comes to face to face friendships, I'm not sure what happens. I try so hard to keep a healthy relationship going, but it always seems to crumble, leaving me wondering, if I unintentionally push people away.

But last night, while at a 4th BBQ, no one there judged me, or really even stared at me. They accepted me...for me.

Some at that party are my friends on Facebook and read my blog, so they know some of the issues our family is facing, so maybe it was easier for them to look past what is so obvious to me.

For the first time, in a long time....I felt comfortable having Neurofibromatosis. It was almost as if, it didn't matter.

I feel okay, explaining NF to those who don't understand it. I am okay with my diagnoses, and will fight hard to help my children feel okay with it too.

People with NF just want acceptance and understanding...but sometimes we have to fight to get it. If you give up the fight, you will only succumb to this disorder and it will drag you down.

For me and my family, the ONLY option is to THRIVE.

A BIG Update!

Well.....We are here in Colorado! YAY! This move has been so emotionally exhausting. I'm am so grateful to be here...and that we can finally start to get on our feet.

The drive from Spokane to Denver was sooo not fun, but there were no real issues and we arrived safely.

THANKS SO MUCH TO EVERYONE WHO HELPED WITH OUR MOVE!!! XXX

Now for the Updates!! We got some news, just before we started packing the truck, that Bailey had been denied benefits for medical coverage for a MUCH needed surgery. Her brain tumor has grown since March and we have been fighting with the state and doctors, to try and get this surgery covered.

After the denial, I have been extremely stressed, wondering how on earth this surgery was going to happen for Bailey....The surgery would happen, regardless of the financial impact, but it was seriously stressing me out.

This week, I got a call from a lady, who had been working Bailey's disability case. The words out of her mouth, just about sent me to the floor. "We reversed the decision On Bailey's case". Unsure of what this actually meant, I questioned her.....It turns out the state approved Bailey for disability and her surgery will be covered!

The impact of all of this, has truly taken a toll on all of us, including Bailey, who reads my blog and knows that this situation was truly stressful.

After this phone call, we called Bailey into the room and told her about this news.....She was just as happy as we were. :)

Now for the doctors and referrals .... and getting everything set up for this surgery. (that's the easy part)