Tuesday, November 11, 2008

Relief and Worries

I don't even know where to start. I haven't posted since Thursday and with good reason. I had to go to Cleveland on Friday to the sleep doctor to find out if it was the lupus making me so tired or if they thought I wasn't sleeping well. Then on Monday I had to take Taylor for her appointment in Cleveland. Keep in mind Cleveland is about an hour and a half away from us so it's no small jaunt, especially not one I want to do on Friday then again on Monday!

We'll start with Taylor's appointment. The doctors were extremely thorough, they asked me a ton of questions, asked Taylor some questions and then had her doing some exercises to see what was going on with her. They have not ruled out lupus, but at this point they are not 100% certain that she has it. They also saw in her blood work that one of her levels was low, that level being her immune system. They are going to repeat the blood work and see if she was just sick when she had it done or if she needs to be put on a medication to boost her immune system. As for the pain, we have always known Taylor is extremely flexible and the doctor confirmed it yesterday. She said that flexible kids do not know their limits a lot of the time and they over extend themselves and are sore later. We are going to keep her out of dance this year and if by dance time next year she is still not diagnosed with Lupus we are going to put her in gymnastics to help her with her flexibility and help her to learn her limits. She is more interested in gymnastics than in dance right now anyway so this makes her extremely happy. That was a huge relief for me.

Friday I left work a little late waiting around for my check that never came and then I got lost. This is not the same office I went to just a few weeks ago so it was a challenge and mapquest, wrong again on the directions! Needless to say I was not happy because I was extremely late for my appointment so I was afraid I'd have to reschedule. If that was the case I wasn't going back. I was on my cell phone with my mom hysterical and she was also on her house phone with my aunt who has to make trips to Cleveland Clinic for my uncle who has Parkinson's. They were trying to get me there when Cleveland Clinic beeped in on my cell phone. The receptionist was so nice and got me there and moved my appointment to a later time so that I didn't have to reschedule. It's like every time I get so frustrated and am ready to give up God reminds me that he is there and still in control. Why do I not remember this all the time?

So this is an appointment in hindsight that I really needed to be at. They asked me a series of questions and some of them were things that I had never told anyone because to me it is embarrassing. I contemplated not telling the truth because it was still embarrassing, but I gave honest answers instead. The doctor looks at me and I said, "You think I'm crazy don't you?" He replied, "No, but I do think you have narcolepsy!" I don't think I have ever laughed so hard in my life. Narcolepsy? Isn't that kinda like amnesia, it only happens in the movies? I have to go back on December 23 at 8:45 p.m. for a sleep study. I cannot leave until 6:00 p.m. on Christmas Eve, but at least this will give us the answers we need. I'm not sure how I feel about this. My family has always joked around about me having narcolepsy because I have always taken naps with my niece, nephew and now my kids and I can fall asleep at the drop of a dime. In fact on a couple of occasions I have fallen asleep at work. I don't know if I have written it down here or just said it in real life, but I am absolutely terrified to drive with my kids in the car. I have dozed off before and I have to fight very hard to stay awake. I guess it kinda all makes sense now. It is very scary!

So that is where we are at now with all this craziness that is going on in my life. I just have to stay awake to drive until the end of December so I can get some answers and figure out where to go from here. Btw, my mom went with me to take Taylor yesterday after the news of my doctor appointment on Friday and she drove. I am not out there making bad decisions trying to kill others. I only drive when I absolutely have to.


Kathy said...

I hate getting lost in big cities. Thanks goodness for cell phones. I am glad that they got you to the clinic and worked you in later. I hope they get the medical issues all sorted out and can answer all of your questions. Narcolepsy, lupus, extreme flexibility..... you have some unusual possibilities there!
Prayers sent out your way!

Kristi said...

At least now you're on the right track to get the answers you need. You;'re so right to try to remember that God is in control. I am having a hard time remembering that myself right now.

Shana W. said...

A friend of mine has Narcolepsy. She takes meds and it is well controlled. I hope that you can get firm answers soon and get the treatment that you need to get to feeling better.

My Wonderful Men said...

Slow progress but getting answers that's good. There are meds for what you may have.
I've been pulled over before for sleeping while driving, it is scary. I don't drive much either, Mike calls me driving Miss Daisy.
You're on the right path it sounds like, keep me updated.

AZMom said...

Oh sweetie. Big hugs to you. You have been through a lot lately. I do hope they can get you the answers and help you need. What a Christmas present that would be. I hope they can figure out what is going on with Taylor too.

big hugs!!!

Jess T said...

Holy crap! I am waiting to see how it turns out for you.

Kellan said...

I'm so glad you are getting answers and hope that it leads to solving some of these medical issues and you are okay in the end - as well as Taylor, of course!!!

Take care - Kellan

Beautiful Disaster said...

Well I'm glad that they are asking a lot of questions and getting to the bottom of things.......ya'll always have the weirdest things going on..........hopefully it will all calm down

KC said...

oh my.. well I"m glad that you answered the questions honestly and that you are on the right path to get the help you need... and I"m glad Taylors appointment went well also.. Do you know when the results of her blood work will be back.
I'm still praying for both of you..

Angela said...

Doctor appointments can be scary things.
Hope you have answers soon.

Andrea said...

Wow...what a weekend! At least you're hopefully going to get some answers though!

Steph said...

Wow girlfriend you have been going through a lot I hope all turns out ok. Dan had a sleep study done recently don't plan on getting too much sleep he said they hook a ton of wires up to you then tell you to sleep as you normally would, ha!