Day 63. Reminder

I've been feeling frustrated with my blog, my purpose, my position etc. My husband has been making an attempt to read it but I think I'm expecting too much from him and the others in my life by assuming they even want to read it. Disease can be a real downer but I was lucky to be reminded of why I am talking about mine on a daily basis.

On Saturday, in the middle of a rough patch I opened my email to find the following;

"Hello Annie. My name is Holly. I just came across your blog tonight and have started reading it from “Day 1”. I look forward to reading all your posts. I am a 36 year old mom of three beautiful little girls. I have been sick for 4 years with no answers until now. I was finally sent to the Mayo Clinic in Rochester, Minnesota where I received a diagnosis of Behcet’s. I was on a search for others who are going through the same things I am going through and found your site. It feels so lonely when you have a disease that most people you talk to have never heard of. I just wanted to introduce myself and connect with others like myself. I will hopefully start treatment in the next few weeks when I follow up with my doctor back home. I am praying it helps. I also pray that you are doing well with your treatment. I am anxious to read the rest of your blog."

This gave me inspiration and encouragement. If blogging about my daily struggles is helping even just one person to feel like they aren't alone then it's all worth it.

I would love to hear more from other people with Behcet's so please comment whenever you want with input or questions. I know if I can't answer them someone else probably can.

~Thank you Holly for the reminder!

Day 62. Giving Thanks.

It's Sunday again!?!?

This week I need to thank my Mom.

Thank you Mom for everything you do for us. Thank you for working 40+ hours and then letting the me and the girls come over to invade your space on one of your days off. Thank you for your unconditional love and patience. Thank you for helping me at Lily's school carnival. Thank you for your inspiration and constructive criticism (even when I don't want to hear it). Thank you for taking care of Grandma and me and our family.

I love you Mom~~~

[~~~~~~~~~~~~~~~~~~~~THIS MUCH~~~~~~~~~~~~~~~~~~~~~~]

Day 61. Croup

Lucy (2 years old next month) has croup. We had to take her to the ER yesterday (Day 61) to get a breathing treatment and a dose of steroids. Her croup was causing Stridor and we weren't able to clear it up with home remedies so they instructed us to come in. My poor baby. She is doing much better this morning (Day 62. I forgot to blog yesterday...sorry about the confusion). The hospital is a scary place for a baby that can't breath and a mommy with a suppressed immune system. I am already starting to feel the on set of the chest cold that Lucy's croup was caused from and can just imagine what other nasty germs we picked up while there.

The last 2 months have been a big eye opener for me and realizing the lack of sense America has when it comes to health care. In France they still have pediatricians that make house calls. What a concept. The doctor comes to you eliminating the chance of infecting any other babies and reducing the possibility of us contracting something while we're already battling something. I guess this wouldn't help the pharmaceutical companies make their millions. Less illness means less money for them and Lord knows we can't have that.

New goal; Move to France

~

Day 60. Too much to handle

Crazy day....to much stress...literally felt my adrenal glands excreting there toxic fluid. Ended the day visiting with a friend, watching my Lily have fun.

Day 59. Example

This morning was a perfect example of how my life works most of the time.

Thursday morning is Yoga, except I haven't been in a few weeks. Last week I was sick. The week before that Lucy threw a fit in the childcare before I was even able to start the class and my friend who was supposed to meet me there for her first Yoga experience ended up being 10 minutes late. Which if you have ever done a Yoga class you know the first 10 minutes is detrimental. With Lucy throwing a fit and my friend being late we decided to bag the idea, pack up the kids and head to Trader Joe's instead.

This morning at about 8:30am the same friend sends me a text asking if I was going to Yoga. My reply "I should". She says she wants to go, so reluctantly I change my clothes, pack Lucy's bag and drop Lily off at school just in time to get another text from her saying that she can't make it because of an appointment she forgot about. My first thought; Awesome! I was off the hook so I headed back to the house to sit on my lazy ass in the morning sun and read my book. Got home unloaded Lucy and the bags, just in time to get another text that said "Oh no thats this afternoon I can still make it". Now I'm getting a little irritated but secretly happy about being held accountable. We load back up and head for the gym, again. I put Lucy in childcare, go to class and wait and wait and wait. I spend the first 15 minutes of class trying to be "centered" and "united" while constantly looking over to the windowed wall to see if she is peering in. In between poses I put away the mat I had laid out for her and try to refocus on my form.

Suddenly I realize that it's about time for the ladies in the childcare to come get me. Usually about 20 minutes after I drop Lucy off she starts freaking out, if not immediately. So I start looking out the other windowed wall, the one that faces the childcare door. Then I start laughing, it's dawned on me that this is by far the hardest Yoga I've ever done. I'm sweating, my legs are shaking, I feel like I'm going to puke and I may just even shart. Not because I'm not focused, although that totally screwed me up for the rest of the day, but our Yogini must have woke up this morning with a wild hair up her ass.

It's a good thing that my friend wasn't able to make it (she had to go see her mother unexpectedly). She would have been scared to death to go to another Yoga class after this mornings.

Day 58. Shout out!

Just wanted to give a shout out to my friend and fellow Behcet's sufferer, Andy Barwick. You can find his blog at www.andybarwick.blogspot.com and also keep up with him on his website www.andybarwick.com. I think Andy has a new voice dictating software so he doesn't have to suffer through the pain of manual typing. He might be updating more on the progress of his documentary and status of his Behcet's treatment. If you haven't read his blogs you really should. He sheds a completely different light on Behcet's Disease.

Always thinking about you Andy.

Day 57. Babysitting my healthcare providers

I'm feeling better today but I did get a nice headache from doing the 'doctor office verses insurance office' shuffle. Supposedly one sent the other something but the other never got it...bla bla bla. Now they only have 7 days to get my stuff over to them before my case goes to review. I love how GHC didn't put that in the letter I got in the mail today (it's a good thing I called them to get the REAL scoop). Actually the letter clearly states that they are going to need an additional 16 days to review my case. Liars, Cheats and Frauds...oh my!

Dealing with this situation is like adding two more kids to my life but really bratty kids that I have absolutely no affection for, okay so maybe it's more like two big stupid smelly obnoxious dogs that leave big piles of shit everywhere for me to step in. My insurance should realize that it would be a good idea to avoid crapping everywhere since it induces stress-caused symptoms which potentially cost them more money. Can I get some preventive care around this place please?

I have to say that my doc's office is the good kid/dog and my insurance company is definitely the bad one.