Not So Patiently Waiting.

Back on 8/15 we had another neurologist appointment. Kelly knew nothing had changed, but we were still hoping for a good report. The Dr wanted us to see him before the scheduled EMG to see if the test would be needed. The Dr decided the test was not needed but not for the reasons we hoped. Kelly's physical assessment was markedly worse than it was 2 weeks before. :(

He decided that we needed to do several months of back to back IVIG therapy. (This really wasn't any surprise to me after all the research I have done). I was happy that we at least had a direction to go in.

His appointment was on a Friday so we knew it would be the next week until we heard from the infusion center to set up his treatments (3 days in a row 4-6hrs a day). Unfortunately when we heard from them, the soonest they could fit him in was the 10th of September.

This will make it 2 months from his first treatment. I was really upset by this at first. I just couldn't understand how we were to wait so long and risk Kelly getting worse.

Once I calmed down and thought about it, I realized there really wasn't anything we could do about it. If we wanted to change locations or even do home health we would have to wait for insurance to approve and it still would have been around the same time.

1 more week to go and it can't get here soon enough.

For the most part Kelly is doing alright. We learned the hard way that he has to be careful and not overdo it. Last week we had our daughter's open house at the high school. He decided he wanted to go.

Open house consisted of spending 10min in each classroom. We had 5 minutes to go from class to class. This time frame was hard on him. By the time we left the school his legs didn't want to work anymore. Needless to say the rest of the evening was rough on both of us.

I will end with sharing the blessings we received this week end. Two of my work family donated much needed items to us! We now have a walker for those times when his legs aren't cooperating enough to use his cane. We also now have a great fold up wheelchair! Now when we go places that require a lot of walking he can ride in style! I can not express how much I appreciate all the love and support we have received over the last several months!

Happy Birthday baby!! :)

Everything Changes

It's been too long since I have posted anything...

We have had a lot going on...

My husband, Kelly, has been diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). I am sure most of you have never heard of this before. He has lost most of his feeling from his waist down. He has a hard time walking, can no longer drive, and is now is almost constant pain. As of a couple of weeks ago, he is having similar issues with his arms from his elbow to his finger tips.

I want to share our experiences. There is not a whole lot floating around the internet about this rare auto immune disease. Part of that is because it is rare and there are a lot of unknowns.

I have read some other blogs from the perspective of those suffering from CIDP. I want to share his story and mine. I might not be able to update as much as I would like too, but I will try. I desperately need the release! I will also continue to share recipes and fun stuff also.

SO here we go...

In January Kelly started noticing some numbness and tingling in his legs. He didn't think too much about it at the time. He has been having issues with his neck since summer of 2012. He was seeing an ortho doc on a regular basis for these issues.

I noticed he was having issues in February. He stood up one night getting off the couch and stumbled. It wasn't your normal, sitting too long stumble. It was more of a my legs don't work/aren't there stumble. I asked him what was going on. He responded that his legs were numb and had been for the last few weeks.

Being the great neuro nurse that I am (please read that with your best sarcastic voice!), I immediately did a neuro exam on him ( I really and a nurse and I really do work in the Neuro unit!). He didn't have any foot drop (thank goodness) but he was definitely weaker. Luckily he had a ortho appoint in a few days. The ortho doc took x-rays of his lower back and ordered a MRI of his thoracic and lumbar region.

Once the scans came back, the doctor didn't see anything that would explain his symptoms. We, of course, were assuming/hoping that he had a bulging disc that might be causing them (and not anything more serious). Especially since that was part of the issue with his neck and why he was having so many issues.

He referred us to a neurologist (by this time it was May and Kelly had started using a cane to walk). The neuro doc wanted him to get some more tests including an EMG. We were scheduled to come back to see the doc a week after the EMG.....were, but the doc came in and told Kelly he would see him first thing the next morning. Apparently his EMG was one of the worst he had ever seen. He said he knew without a doubt that Kelly had CIDP.

He gave us the option of doing a couple more tests or starting treatment right away. He said the tests wouldn't tell us anything he didn't already know and they would mean delaying treatment....even longer. We opted for treatment. He started him on Prednisone 100mg daily for 1 month.

When the month was up we went back in for a check up. The Dr thought Kelly had more strength, but was still having sensory issues. He gave the go ahead for him to start IVIG treatment.

So far he has had one treatment. The first treatment is run in slower, over more days, due to the risk of side effects. On day 2 of 5 Kelly started to get a bad headache (common side effect), so they slowed his rate down even more. Another side effect of the IVIG is fatigue. By the end of the week, Kelly was exhausted (even more so than normal, since fatigue is also a symptom of his CIDP)

We are now almost 4 weeks out from his first treatment. He hasn't noticed any improvement and I think he is stumbling more. He had a check up 1.5 weeks ago and the Dr still thinks his strength is getting better. He thinks the main issue is the sensory part. He ordered physical therapy (2x a week) and another EMG. He wants to looks at actually numbers to go with his physical assessment and see if they correlate.

The EMG is scheduled for this Friday 8-15. I am assuming Kelly will be scheduled for another round of IVIG. I have read/heard that it often takes a few treatments to see any progress.

CIDP is different for everyone. There is no cure. Hope is to slow the progression. Some people have periods of remission/relapse (I don't see that being the case with Kelly). There is so much unknown.

So that is pretty much where we are now. I will try my best to keep updates coming. Please feel free to ask any questions.

I would greatly appreciate any thoughts, prayers, good juju, or any positive energy that you all might want to send our way.

Quick update!

I am hoping for a better week this week! We had sickness and what not around here last week! I am re-dong week 2 of Insanity! My workouts got so messed up, I feel like I would be better off just dong the week over!! I have a great go to snack/sweet craving that I am going to share in the next day or so!! It's light and fluffy and oh so yummy! I hope everyone is having a great week so far! I am determined to update more and share what is going on around here!!

Christmas Time (a tad bit late!)

Christmas will always be one of my favorite holidays. My mom instilled the magic of Christmas in me from a young age. These past few years I have not been able to get into much of a Christmas spirit. I really hate it for my kids. I want them to feel and enjoy the magic for years to come.

That being said I am trying harder this year. It's hard...this year is really hard on me. But my kids make it worth it! So I will pull myself out of this funk and continue on!!

So we have been having fun the past week or so!
We baked cookies!!
We made Gingerbread Houses!
We have this silly elf that has been running around the house!

All in all we have had a good Christmas thus far! We are beginning new traditions!
I hope everyone of you all is enjoying this time of year!

Insanity Week 1

I am done with my first week of Insanity! I seriously think Shaun T is out to kill me! I just thought I was in bad shape when I started!! I can't wait to take my second fit test and see how I have improved. I will admit some days have been better than others! 
I crossed a milestone this weekend that I would like to share! As many of you all know I work Sat and Sun nights. This makes getting workouts in, very say the least. So, on Saturday, I had a choice, nap before work or workout! Can anyone guess what I chose?

I chose to workout!! All I can say is that I made the right choice! I felt so good. It was my best workout since starting the Insanity program. I had energy to burn for hours!! Everyone at work wanted to know how I was managing to stay awake (it was an unusually slow night for us!!) I made the right choice and I will do it again in a heartbeat!!

I have a FB page
Check out my Beachbody page at

I you are curious about products or workouts, please feel free to ask!! I will help you in any way I can!!

Insanity Day 1

So, I have tried TurboFire, Hip Hop Abs, and Rev Abs. Today was my first day of Insanity. I admit that I had fallen off the workout bandwagon. Things have been crazy around here (yes I know that's no excuse!) The point is I am out of shape again, but hopefully not for long. The fit test, kicked my butt!, But I am ready to Bring it!! I love Shaun T. He is such a great motivator. 
I ended my workout with my daily Shakeology!! I am becoming a wiz at recipes!! My recent Favorite is the Chocolate Shakeology with almond milk, banana, and peanut butter!! So yummy!
I have been looking forward to starting Insanity for awhile now!! Even though I almost puked today...I will be back tomorrow...and the next day...and the next!!

I have a FB page
Check out my Beachbody page at

I you are curious about products or workouts, please feel free to ask!! I will help you in any way I can!!

Candy plates

So, as many of you already know, I am an avid fan of Pinterest ( I know most of you are too!)! I have found so many helpful recipes and ideas on there, I will be busy for quite awhile! One that I found a while back was for these really cute Serving trays! You make them out of Starlight Mints. The original Blog can be found here DIY Serving Tray.

I found the mints at the Dollar store!! (Score for cheapness in case it's a bust! ) So I bought 2 bags of red and 2 bags of green. The plan was for the girls to make trays for their teachers. This project was fun and fairly easy!!
 So we laid out the mints out in the desired patterns!!
 Here is the first one!! We immediately fell in love with it!
 And here is the Pattern Taylor ended up coming up with!
The girls had a great time and the trays turned out really good! Too bad neither one of their teachers will be getting them this year!

First warning, they break very easily! Madison was so excited about her's she had to pick it up while I was out of the room. When she 'set' it back down on the granite counter top....'CRACK' it broke... (and her's was my favorite!)

I received several questions asking if they were sticky! Honestly they were a little bit (2 out of 3). Not sticky sticky, but a little tacky to the touch! So...I read somewhere about sealing them! (Second warning!) I also thought I remembered someone saying you could possibly use Mod Podge.......Do Not, I repeat....DO NOT use Mod Podge!! Here is what will happen!!
 I will say that it is no longer sticky!! :) So next time I will use a spray sealant!

I also tried to make a Christmas Tree! As you can see I had the right idea, the mints on the edges just melted a little too much! I will try again! I have some ideas to stop/contain the melting. Don't worry I will share once I figure it out!!

This was a wonderful and fun project for me and the girls! We will definitely be working on perfecting it and next year it's on!!