(above is me bedridden for a while and sad from being sick... with some slight graphic alterations ha ha)
It's been a really long time since my last entry. I've got reasons, but they're not very good. See, I've been told that I have a pattern with my blog posts. That they fluctuate from positive and hopeful to distraught and a little hopeless. I realized that this must be a reflection of my own personal moods and energies, so I resolved that I would no longer fall into that pattern. That I would keep the hopeful, positive me around forever. So, when I started feeling I could not write a positive blog post one day... that led me to delay ever finishing my draft. And this bad mood went on so long, that when the positive one swung back, I had forgotten my blog.
Luckily, I've been thinking all week(s) I really must start blogging again. But I kept avoiding it still. See, believe it or not I have been working on a novel since the tender age of twelve! (ha, one would think I would be a slightly better writer by now!). Well, I've been working on this novel a lot lately and am trying to prepare it enough to be sent to publishing agents by the end of next year. So, whenever I felt enough motivation to work on my blog, I'd berate myself instead, thinking things like, "Ah, so you feel up to blogging but you haven't touched your book today? What happened to writer's block missy!" Unfortunately, this line of thought carried on for quite a while...
Well, about 15 minutes ago, a lovely new endo-sister facebook friend of mine, well, she commended me on my thoughts and blog and it honestly made my day. Friends are bound to complement you once in a while (they've got to keep you around some how) but when a stranger likes what you've done, you know they have to mean it. So, as is my rule, I won't use your name endo-sister, but thank you again for your kind words!
Now, what I want to blog about tonight, is largely responsible for my long swing of a negative mood. That being, I've sacrificed a lot of my life this year to do some pretty radical treatments... and they didn't work :(.
I am in my final month of the chemo-classified drug Lupron (Hormonal Chemo... good times). I got my final injection on October 26th (drove 14 hours to get it too--long story), and exams and ultrasounds prior to it showed that it did not work. It is supposed to chemically force my ovaries into menopause (while wreaking havoc on my body). This is to stop estrogen production and stop your reproductive system from building up endometrium. Unfortunately... apparently my body really, really likes to build those cells (endometrium). My ultrasound showed an endometrium layer in my uterus one centimeter thick. Granted, that's half as thick as it normally is, but still, that's while I've been 'menopausal' for four months.
On top of that, I had a hormonal IUD placed in my uterus. This was to stop endometrium production locally, in my abdominal area. Not only did it not work, but my uterus was very ticked about it being there. I had constant sharp, jabbing pains. Eventually, it had to be removed. But the joy doesn't stop there. When the doctor took it out (completely correctly, he did nothing wrong), it tore my uterus on the exit. Apparently the chemicals can thin my uterus down to paper, even if they can't stop it from making endometrium. Well, within 24 hours I start hemorrhaging. At first, to be honest, I thought I started a period... I quickly realized that I was quite literally bleeding. Luckily I was home with my parents at this time. My mother had me call the on-call doctor (my doctor luckily) and he told us what to do. He called in prescriptions, told me to keep still, and we got to avoid an ER visit. But honestly, I know other women's experience with these IUDs must be vastly different, because I was not ever warned of that being a possibility!
Now, to top it all off... I must really seem in the whine game now... (darn it, I'm going to owe so many quarters to my bitch and moan jar...!)... I may not have colitis. Yeah, shell shocker there. Well, see, it comes down to several possibilities. And all are equally valid and non-valid--meaning my symptoms are extremely confusing and contradictory. For example, I have all the visible symptoms of colitis or colonic Crohn's (like ulcerations, plaques, blood, BM frequency and bloodiness) but my blood and MRI studies do not support this diagnosis. So where does that leave me? I am either a very special case of Crohn's that is difficult to diagnose, or my endometriosis burrowed through my intestines and is mimicking inflammatory bowel disease symptoms. Goodness, how did I get so lucky?
The problem is... well, the problem is me. My doctors testify that more often than not, if there is a chance for a special case, if there is that odd 1% reaction... I tend to be that case. Nothing really goes with my body the way I want it to. Heck, even after getting my wisdom teeth removed, I was one of the lucky persons who's jaw bone migrated over, poking through my gums, exposing the bone and cutting my tongue! Can't sand it down because it harbors my nerve, so it'll just stay and keep cuttin'! Because I'm just special! So when it comes to making diagnoses, which are done using data from averages, it's hard to make a diagnosis on special freaks like me, ha ha ha.
It's taking a while to fully determine what Chronic illnesses I have, how are they interacting, and how can we treat them. I've been on two prednisone tapers this year for IBD flairs, and got pneumonia twice. Prednisone works, but it's dangerous, and should be a last ditch. We've got to find a way to keep my body from flaring up in the first place. How is that done? I'll let you know when I finally do.
Women with endometriosis, they are used to many failures in treatment. The next thing, that thing that's supposed to make it all go away, we'll try it and it fails. We're used to that disappointment, but can never really be used to that disappointment. It's heartbreaking. It's spirit breaking. It feels that I am being constantly pushed to the ground and am struggling to get back up.
But I'm getting back up. I've had three major failures, I'm not quite at the bottom, haven't hit yet, and I'm getting up before I do. I've met with a nationally recognized endometriosis specialist in Ogden, and he is giving me a breakthrough surgery to get rid of all this deep tissue endometriosis that gives me so much daily pain. The stuff that Lupron couldn't break down--Dr. Aarington is going to scrape that tissue out! He's not going for the branches, he's going for the tree!!! and I know that there are chances that this may not work either, but I have to fight this disease as hard as I can. Someday I'll get there. Someday.
At least I'm back up.