Sunlight and Surgery

Every day I'm out walking, enjoying the sunshine, exercising, building up stamina and endurance and happiness... because in two weeks I'm losing a bunch of reproductive organs that I don't really need anyway.

Here are some little known facts about Lady Issues and ICL:

ICL is weird. I have crazy mood swings (which you may have noticed, if you read the back and forth posts on this blog) which are actually clinical and hormonal, and only last for a couple of days (aka PMDD, which is unrelated to ICL). But ICL helps to limit my options for controlling my hormones. Not being able to use an IUD (infection) or Lupron (drug interactions) is annoying. This also interferes with controlling my weeks-long periods (For the record, the other factors are blood clots and migraines).

ICL (with low CD4) can also give you a really significantly increased risk of cervical cancer. High enough that my doctors just recommended we take it out (apparently you can also have pap tests every 6 months, if you really want to keep it). Also important, is that getting cervical cancer is not as trivial as in the general population. It's more serious and generally more fatal in ICL patients with low CD4 counts, even if you catch it early. So cervix =/= happiness. 

ICL-related meds like Septra and fluconazole, and really a lot of broad spectrum antibiotics and antifungals, have QT prolongation as a side effect. So do certain long-term Lady Issue meds, like Lupron. Since it probably won't be the same doctor prescribing both types of medications, it's a good thing to keep in mind. Also, since many broad spectrum antibiotics aren't compatible with pregnancy (except dapsone), you should consider making sure you (or your ICL patients) are on long-term birth control or have a good pregnancy plan. 

Why am I even posting this, because I am not a doctor or a nurse or in any way qualified to give health care advice and please don't listen to what I'm saying without consulting your own physician/ if you are a physician I have total confidence that you are going to verify what I'm saying just in case I'm totally wrong? Well, because Rare Disease that Usually Strikes Males Over 65, that's why. And because, despite having access to the massive wealth of HIV information out there, I didn't actually find out any of this until we were making a surgery decision. 

In the meantime, I'll be spending time walking in the sunlight and lifting far, far more than 10 lbs and eating whatever the heck I like. Hopefully this time I will not get a 7 day paralytic ileus which is finally resolved by a case of C. diff. 

That's what I call an.. 

*puts on sunglasses*

opportunistic infection. 

Oh, yeah. 

*Walks away*

Bittersweet

Sometimes the fight without becomes less important than the fight within.

Sometimes the silence is harder to take than the noise, because the thoughts that occupy it are so poisonous.

Sometimes my biggest battles are inside my head, because being positive is an active thing and to be honest? I'm really not very good at it.

Sometimes all of this fighting and battling and setback after setback and turndowns and roadblocks have me struggling more not to become a horrible person than to actually make life better for my family.

I need to be positive. I need to think positive. I need to not become this bitter, hateful person that is constantly in battle mode, feeling anger towards the unfeeling bureaucracy that cares more for budgets than special needs children.

We lost every non-medical pediatric service we had access to in the last month, except one. And that one is now officially up for review. Not because we're not in need, not because we're not eligible, but because the government is slashing the budget very, very harshly across the board and the cuts need to come from somewhere. We are not on the extreme end right now, and we are no longer in crisis, so we are getting cut.

I'm trying so hard not to become bitter, but I'm failing. I fought tooth and nail for every single one of those services. Now they're gone, and it feels like all of my work was for nothing. Nothing. I'm trying so hard not to dream about it at night, but I can't. How do I live with this? How do I live with the fact that no matter what I do, no matter how hard I try, no matter how much effort I put into it, I cannot fight this? That it feels like a parallel for fighting my body, fighting myself, a constant reminder that you can give it everything you have, everything, but if a force more powerful than you wants something more than you, wants something different than you, then you will lose and lose hard every time?

I'm being maudlin, I know. Tomorrow I will have more energy, tomorrow I won't feel this bad. I'm sure there are positives right now, even though I can't see them through the dark.

I think I just ran out of fight.