Tuesday, August 9, 2011

Just one more thing, again?

Yep, it appears we have added ONE MORE THING to our plate. I am still trying to figure this one out.

During my back to school teacher meeting a couple of weeks ago I was explaining ITP to a co-worker. Another co-worker/friend overheard our conversation and asked if I had ever tested The Princess for Lupus. Her husband has Lupus and has several of the "issues" that The Princess has.

I brushed it off a little since we had back to school meetings and start of the school year craziness going on. Later that week I started thinking about and researching a little more into all of the "issues" The Princess deals with.

Could her low platelets be related to Lupus? Yes.

Could her odd breathing be related to Lupus? Yes.

Could her leg pain be related to Lupus? Yes.

Could her dysphagia be related to Lupus? Yes, apparently so.

Could her restlessness and seemingly lack of restful sleep for her entire life be related to Lupus? YES.

Could the fact that she FREAKS out when it is bright outside (Hello, AZ!) be related to Lupus? YES.


Even after reading all that I read, I did not think it could be possible. She seemed to have several of the "possible symptoms" of Lupus. All of those things combined point to Lupus. So, what is a worried mama to do? Take her in for blood work, of course.

Last Tuesday the 2nd I took her in to her pediatrician. I explained my new theory and since she knows us well, she did not question me asking her to test for Lupus. The nurse came in and drew the blood. We would have to wait about a week for the results.

Over the following weekend, while still waiting for the results I thought about it A LOT. We spent about an hour outside on Friday night while The Superhero had soccer camp. It was HOT. Hot is an understatement. It is August in AZ after all. The Princess DID NOT want to be outside AT ALL. She kept saying she wanted to leave. Then we went for ice cream afterward and she just sat there. It was very strange for her to just sit there. Staring into space. Not interested in her pink sherbert. Just not herself. It was weird. Photosensitivity, perhaps? Ugh.

The weekend came and went. Then it was Monday. I decided to call the peds office and see if the results were in yet. I knew it was almost a week, but not quite, so I might have to wait. The results were in. BUT, no one in the office that day could "interpret" the results until the next morning.

Ugh.

Then today both kids were acting "off" and our friend's kiddos all have strep throat. I decided to take mine in for throat swabs. Thankfully that was negative.

While we were there, I asked about her lab results. Our doctor is out of town. Our Nurse Practitioner was not there. Our normal nurse was also not there. The med student, who was working today with a different nurse pract. came in. She basically said "I have the results. They are positive. Are you seeing a rheumatologist?"

Um, NO.

"Well, we are not sure what the next steps should be. Dr. F. usually sees her and knows her history, you should just follow up with her when she gets back next week. Would you like a copy of the results?"

Um, yes, I want the results. I will call a specialist myself!

I LOVE our docs office, but really, this was the worst experience when telling me lab results today. It did not make me feel better.

Before completely losing it, I called Wendy on my way out of the office. She is really good and helping me stay focused and not freak out. :-) (Thanks, Wendy!)

I then drove over to my mom's house. When I got there I looked up the number to the PCH rheumatology office and chose a doctor, then called and made an appointment for next Tuesday.

So, now we wait. I am anxious to see what they say about her results. I am anxious to know what our next steps will be. I am doing my best to have Faith that all of this is for a reason. Today I am struggling with this and all the "why us" questions. It will get better. It has to.

I will update next week. We see the hematologist on Thursday and the Rheumatologist on Tuesday. I am sure I will more than enough to say again after both appointments.

For now, I will just go off and cry. Sigh.





*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

22 comments:

Neverending Joy said...

Oh, Tracy, I'm so sorry. My heart aches for you and your precious little princess. Hugs to you tonight, and you will be in my prayers this week. Love you!

Wendy said...

((((LOVE YOU!!!!!!)))

I'm so sorry. Deep breath...try to keep your head from exploding at least until you can see the specialist.

It's so much.

Too much.

God knows your needs. Remind yourself of this often.

Leigh said...

I'm so sorry, Tracy. I guess the autoimmune disease gene is pretty strong in your family. I believe that God only gives us what we can handle. Your two kiddos are so lucky to have such smart, strong parents. I know that doesn't make it any easier though :(.

Meri said...

God bless you Tracy. A new language to learn perhaps...and new something to advocate for...but the same amazing mother. You can do this! Your kids are lucky to have you. Hugs!

Hallie said...

I'm so sorry, Tracy. There really are just not words to help or make you feel better. Just know that we love you and we are praying for you and we are here for you. Always.

Stephanie said...

I am so sorry, Tracy. That is not fair to have yet another diagnosis added to your plate. I will be praying that you get some answers quickly!! ((hugs))

Laura @ Houston We Have A Problem! said...

Sweet, sweet, sweet, sweet Tracy! Thinking about you, praying for you and just sending you the biggest hugs ever!!!!

Alexis Nicole said...

Oh Tracy I wish I had something profound or helpful to say.

I offer hugs, love, and prayers!! Thinking of you guys.

Heidi / D-Tales said...

Oh, Tracy!!! Keep thinking it will get better. I'm sending you lots of love and hugs!!!!

Misty said...

Oh Tracy, I wish that I had something profound to say here. I have been and will continue to keep your sweet S in my prayers. Please know that I am sending you much love and virtual hugs! Love you!

Joanne said...

Oh Tracy... that just sucks. I can't even say it nicer than that (although I could say it a lot worse). I am so sorry that you have ONE more thing to deal with. Poor Princess. Poor Tracy.

But knowing you, you'll be okay. You are one super-terrific Momma, pancreas, and now you'll just be amazing at whatever you have to be for Princess. HUGS, my sweet friend.

sky0138 said...

I just wanted to say I am so sorry you are having to deal with this! Sending hugs and prayers your way!

Jessica said...

My heart aches for you and your sweet girl. I am so sorry for the rough road you are traveling, but you are strong enough to do this. You are already doing this. And we are here for you to lean on whenever you need it. BIG hugs.

Denise aka 'Mom of Bean' said...

*sigh*
what to say, my friend!
who wants one more thing, but if it provides some much needed answers and possible better treatment, then that's good, right?
sending you hugs and prayers!

Anonymous said...

So sorry. This is really crappy luck. It's too much to have to deal with and so unfair. It is possible to have a mild case of Lupus that does not progress and I hope and pray for that. One autoimmune disease is more than enough. Hoping the specialist has information that will help keep her healthy

WendyP said...

Oh Tracy, it's definitely too much. You've had more than your fair share. I know it's not what you wanted to hear but at least it's an answer. Something solid you can direct your focus toward instead of just wondering what the heck is going on. I'm so sorry you have to have another thing on your already overflowing plate.

Lora said...

I am sorry that I am just reading this. My arms are wrapping around you tight.

All I can say is that maybe this dx will be the answer you need. Maybe now you will know what to do for her and both of you will get a break. My sister-in-law has Lupus, she went un dx'd for a long time, but she is doing WAY better now that they know what they are dealing with.

Prayers still coming your way.

Reyna said...

Oh Tracy, I am so incredibly sorry. There are not words...and, yes...why you?! I wanna know that too. Keep swimming girl. Keep swimming. Love.

Roselady said...

I can only imagine your frustration waiting for those labs. At least you know, whatever little comfort that might offer. But, hoping that some good things happen now to offset all the bad that's been in your life lately.

Rachael said...

I'm so sorry. Waiting is always so hard. You are loved by so many. Just know you are not alone, and you are in our hearts and prayers. Hang on there friend! :)

Nicole said...

all caught up now and just sending love & hugs for you and princess :) and your whole family!!

NikDuck said...

Tracy, I am so sorry to read this about your sweet girl. I will be praying for you and the Dr.'s wisdom. What a great Mom you are for trusting your gut and following through with all the right tests and now Dr. appointments. Praying for clear answers.

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