Like Mother Like Daughter

The last month or so has just been one steaming pile of crap on top of the last. I’ve found it really hard to have the motivation to post anything positive. And frankly, it is far too easy for people in my real life to come here and read this for me to be as honest as I’d like. So I haven’t felt much like posting. Until now.

The biggest thing the last few weeks is that my daughter has been sick. I’m not going to go into detail, she’s 15 and it’s really her business. But, long story short, we have no idea what’s wrong. There’s been a couple of trips to the local Children’s Hospital (not just one of the best in the state, but one of the best PERIOD) to see a specialist and for tests and there are more to come.

So far everything has come back normal. Which is great! But as all of us Spoonie and Chronic Babe types know, it’s frustrating as hell. She’s still having the same problems. She’s not getting better. We may have ruled a few things out, but we aren’t really any closer to having an answer. Without an answer, there’s nothing I can do to make her feel any better.

Teenager in hospital gown

My daughter is a medical gown fashionista

Worse still, this mystery is impacting her ability to go to school. It’s pretty much impossible for her to make it through a whole day of classes without needing some sort of break, or feeling like she’s going to be sick. Between that and missing classes to go for doctor’s appointments and tests, she’s missed a lot of class. Needless to say the school is not happy. Let’s just say we haven’t necessarily gotten a lot of care and support from those who are supposed to be interested in seeing her get through this and succeed in her classes.

The nurse at school has said she doesn’t know if my daughter is well enough to keep going to school. The doctors don’t seem all that prepared to say she’s sick enough to not go to school without having some idea what’s wrong with her. So I’ve spent the last week scrambling to find other options for finishing the school year. Thank goodness I’ve found a cyber school that will take her for the last quarter of the year and have started the enrollment process.

But it take takes time and most days I send my daughter to school in tears as she struggles to make it to the bus. I can see how awful she feels. I can pretty much predict when I’ll get the first call from the nurse’s office about coming to get her. And I’m pretty much helpless.

There are some signs pointing to the possibility of auto-immune disorders, meaning she’d be like me. Just the fact that she’s had some sort of reoccurring illness in 9th grade makes her a lot like me. The fact that we don’t know what’s wrong with her makes her even more like me.

I’m proud to say my daughter is like me in a lot of ways…We both love to play the flute. We love to be on stage. We can’t help but write, and we’re not horrible at it…The list goes on and on. The one way I didn’t want her or her sister to be like me is in the health department. I’ve known all along that the chances were pretty good that one of them would follow in my health footsteps, but I really hoped they wouldn’t.

I know that all of this is out of my hands, but it doesn’t stop me from worrying. It also doesn’t keep me from feeling incredibly stressed while I’m trying to stay on top of doctors appointments for both of us, and the 101 steaming other piles of crap that are still here and have little to nothing to do with anyone’s health.

Maybe I’m wrong. Maybe it’ll turn out that she’s not like me at all. At least that’s what I’m praying for.


Putting My Life in the Hands of Someone New

English: Cartoon of 1906. The physician has pl...

I don’t think my appointment will go like this, but with a new doctor you never know what night happen! Cartoon o

The time has finally come for my first appointment with my new rheumatologists. I’m not comfortable saying who it is, at this point at least, so for now I’ll just call it The Center.

I’m really pretty excited about the appointment. One of the things I hated about moving was leaving my old rheumatologist. I loved Dr. O. She was kind, compassionate, tough when I needed it, and actually responded to phone calls and emails when I had questioned or needed help. The consolation was I moving to a city with a well-known and highly regarded center for the treatment of Lupus and other autoimmune disorders. The Center has doctors that are considered some of the best. They are some of the leaders in research and treatment in the country — they publish papers, speak on panels, guest edit medical journals, in short these are the people who are cutting edge of treatment and research for autoimmune disorders like Lupus, RA, Sjorgern’s Syndrome and others. If I’ve got to find a new place to go for treatment this seemed like the place to go!

But, as anyone who’s ever gone to see a new doctor and been greeted with something like, “And what makes you think you’re sick?” you know it’s not easy to walk into a new doctor’s office. There’s always that bit of fear in the pit of your stomach. And that part of you that gets ready to defend yourself or for a fight.

It shouldn’t be that way. I know that. You know that. But that’s that the reality.

You would think that a place that specializes in people who other doctors have refused to believe (because, come on, if you have the kind of chronic illnesses that would bring you to the doors of a place like this, a doctor somewhere told you that it was all in your head) will be different. You’d think that they’ll be kind. You’d think that they’ll be believe you. But still, there’s that little bit of fear.

I’ve had the pages and pages of patient background forms to fill out for weeks. They’re sitting on my dresser looking at me. Even as I type they are staring me down. I just haven’t been able to finish them. I’ve done a few questions at a time, just not buckled down and do it all. I’m sure it’s all a mental thing.

Let’s face it, I’ve been on a somewhat rapid decline the last year. There is a very good chance there is another diagnosis in my future – the one I’ve always known would probably come eventually and half dread, half look forward to just so it stops hanging over my head. If anyone can jump into the mess that is me with suggestions that might actually help, it’s these people. Then why am I so scared?

It’s the fear of the unknown. It’s the idea of putting my life in the hands of someone new. Even if these are some of the best hands around, and I am incredibly lucky to be able to be a patient at The Clinic. I think this is just one of those times I need to have faith.