It seems I am often unaware that I've just been through hell until I'm up on a green hill in the sunshine looking back. That's kind of what life is like for me right now.
On Labor Day, Ginny and I went with Dawn, Logan, and friends of ours Sammie and Theresa to the Ren Faire. It was a very hot, very sunny day, and so - of course - my eyes became blurry, especially my left eye. I have MS, and ever since some flares in the '90s, my eyes go blurry when I'm overheated. Still, it was a great day, we had lots of fun, and so I didn't worry about my eyes.
Often the blurriness clears up in a few days. This time, the right eye snapped back the way it's supposed to, but the left eye took its time. Then it began to hurt VERY bad - but this is still within the realm of "normal" for me. I just decided to wait it out. Around this time, too, it became harder to pee. I could tell I wasn't peeing enough, even though I was peeing often.
And here's the thing. We had just moved. Dawn and Logan gave us six weeks to plan a wedding. One person on staff at work was having a baby, and another person on staff was having heart problems. There simply was not time for me to not be OK. So I just figured, again, that I'd wait it out.
Well, Dawn got married and moved to Germany. Staff issues resolved themselves. And my left eye, which had been getting better, started to hurt again. Then it occurred to me, hmmm, this isn't what usually happens. What if it's not MS? What if it's something, um, awful like diabetes or high blood pressure?
And this is where things start to get hellish.
I go to my eye doctor, the guy I saw last time we lived in Harrisburg. He's a good doctor, plus I know his monther (I cannot believe I'm old enough to say that). Yes, he confirms it's optic neuritis, but has to notify my opthamologist. OK, whatever. The opthamologist is nice, kind of grandfatherly, and very much like a peacock. He rides me for not having a neurologist or taking any of these "MS miracle" drugs. Dude, consider this ... I prefer blindness to the side effects of these drugs. Since I've experienced both, perhaps this is an educated choice.
Whatever.
He sets me up with a neurologist, saying to just hear her out, maybe there are new treatments, and he suggests that a nerve painkiller is now used for maintenance.
Whatever. I go. She's nice. She's Slovak, too, and that's comforting. She pushes on the drug issue, but respects me and my arguments. I feel like I may finally have a partner in figuring out this MS crap, someone who understands I need a long-term plan, since I plan on living a long time, and need my internal organs intact (MS drugs tear up our insides).
She sends me for an MRI of my brain and neck, and gives me valium so I can sit still for an hour and a half as they strap my head in the ol' Hannibal Lecter cage and inject me with contrast dye. I like valium. Valium makes me happy. She gives me three, I use two and throw the third away.
A few days later I'm summoned back to her office. Oh, here we go again, I think, flashing back to this other neuro, Matlin, who had me come into her office (charging each time of course), but instead of working with me on my own treatment bullied me into stuff I knew I couldn't handle. Bitch. I had to take a very long medical leave from grad school because of her utter disrespect for what I knew my body could handle.
So I go into the new doc's office swinging, just KNOWING it would be a repeat. But Dr. Mihalek called me in because I have something going on in my neck. It's bad. Eventually I'll need surgery. Meantime I have to get a PT eval. I'm so happy I could cry. Now I know I can trust her for sure.
But it's another specialist.
Meantime, I finally convince my family doctor that my bladder thing isn't the typical lady in her 40s issue, and she sends me to a urologist, who confirms that I am, indeed, full of piss. This took an ultrasound and a cath. And, oh yes, back to the MRI place, this time for a scan of my kidneys and assorted parts.
They prescribed me Urotraxal, which caused some painful side effects. I swear, if there are painful side effects, I will get them. So then they give me Flomax. Kind of embarrassing, taking a "guy" pill. But it works! I can pee! Bonus, my left eye is back to baseline, so I can see to pee as well.
Let's tally. 1. optometrist, 2. opthamologist, 3. neurologist, 4. family doc, 5. PT (who says to keep doing what I'm doing, my neck's range of motion is impressive), 6. urologist, and 7. radiologist. I've been busy. But I think I'm at the end of it.
The funny thing is, looking at all of this, it was very hard. Doctors and their staff often have a tough time recognizing us as customers who are paying for a service, and mine were generally pretty good, with a few glaring exceptions (the urology nurse who calls me up and asks for Virginia, for example. Not my name). But going through it ... uh, never mind. It was hard.
With MS, the treatments are always worse than the disease. Except, I have to say, that Flomax is good stuff. And now you are all caught up.
Meanwhile, my life is very good. I have a great house, a great family, great pets, a great job and a great ... well, everything. Just once in a while there are spikes of nonsense.
Addendum:
I'm back on Uroxatral. Turns out the flu I thought I caught wasn't the flu ... it was Flomax side effects :( I'm gonna have that guy teach me how to cath, that way no side effects.
