Catching up with the madness that is chronic illness…

Where do I begin? As someone recently put it, I have so many chronic conditions happening at once it’s hard to keep them apart. While that may be true, it’s not something you like to be reminded of. Not by your doctor, and especially not by a friend.

I’ve never liked that phrase, you see. In my family it’s not often said in a caring context. There’s, “You have so many conditions, how are we supposed to know when you’re not sick.” And my cousin’s favorite, “You’re always sick.” Instead of, “HUN, you really should manage your stress better since you have so many chronic conditions. Is there something I can do to help?”

So, yeah, just hearing that bummed me out. There’s so much going on right now medically, and to be reminded of it… that really is the last thing someone with a chronic condition wishes to be treated. I know I’m sick. Even if I don’t look it. Please don’t remind me.

With that said, though, I do have to wait until March (at least) to drive again. My neurologist prescribed Lamictal, adding it to my Topamax. With my upcoming surgery, hopefully having both medications will prevent a big seizure. We are hoping the Lamictal will also reduce or eliminate my auras too.

If you’ve followed this blog for some time you may be familiar with my auras. I have the typical auras common to temporal lobe epilepsy (I have scarring in my hippocampus). The list is long, but the overwhelming ones are a feeling of deja vu, smelling odd odors and getting strange tastes appearing in your mouth, unexplained fear or panic, and a sudden funny feeling in the stomach. Auras don’t last more than two minutes, and usually only 30 seconds. If that.

For me, my main aura is a burning smell. I’ve written about this before. Since  I began having it, actually. I’d mentioned it to countless doctors until finally shutting up in fear that it was simply in my head. I thought it was a hallucination.

Thankfully I ended up with that eye issue in May. My neurologist finally stuck me in a closed MRI tube, versus the interior open MRIs he’d been allowing me to have for years, for a powerful brain scan and we found the damage. Now I’m being treated.

I do fear that the anaesthesia and post-op pain medications (of which I’m allergic to many), will trigger a seizure. Then not only will I suffer through a needless seizure (which my surgeon doesn’t seem too worried about), but my driving clock will reset.

Then we come to pre-op nightmare, as I’m referring to it. I have  way too much to go over with my doctor – my general practitioner – before the surgery, but he’s booked out. As always. I have to make due with his physicians assistant, who always manages to need assisting herself when it comes to me and my conditions. I am in no way confident she’ll be able to answer my questions. And I highly doubt she’ll feel confident clearing me for surgery.

One of my “to discuss” items concerned the rib/spleen area pain I’ve had since May. My GP was convinced – 100% he said – that I had somehow broken a rib. News flash: freelance writing is a dangerous job. You sit at a computer all day and still, somehow, break bones!

Well, a bone scan revealed no broken ribs. His letter to me offered no further clue, though, on what the pain could be or what the next step should be. I mentioned this when they scheduled the pre-op appointment, told them I want more testing and to figure it out before my surgery. They got me in next week but I haven’t seen which doctor it is with.

Maintaining a chronic condition shouldn’t be this difficult.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s