Sunday, September 11, 2011

catch up--in simple talk

Hello everyone, I wish I had been better about keeping up with my blog this past month, but some frustrations and road blocks made it difficult for me to handle everything going on, and to write about it was a little beyond me. But I am going to be better, I promise!

For tonight, a good friend of mine informed me that I used too much 'medical speak' for my blog. I was a little sheepish when he said this, because in all honesty, I thought I had been cutting out extra medical terms and what not. But apparently I am just such a strong nerd, that I could not even see how nerdy my blog was! So, I am now writing today's post in the least medical talk I possibly can. It's an overview of what's going on and recent events. Here we go...

First, I have endometriosis. All women have a uterus. The stuff that grows inside it is a type of lining, which grows and is usually shed monthly as 'blood'--when she has her period. For women like me, this lining grows in places besides the uterus. Which is bad. It grows on the outside of the uterus, the rest of my reproductive organs, my intestines, bladder, etc.. This is really bad, because this lining drips out stuff that makes my insides really painful and swollen. Usually the immune system would clean up this 'stray lining'. But mine doesn't. The lining grows constantly, and if it tries to shed during my period, it has no exit, no where to go, so it just causes a lot of pain and grows in size. So if you look at my insides, there are all these little dark patches of the lining. And when it sheds, the swelling and damage require my insides to constantly repair themselves, and sometimes two organs can be repaired 'together'--meaning they get stuck together, causing even more pain (this is called an 'adhesion').

On top of endometriosis, I also have colitis. This is a problem with my large intestine/colon. My body has trouble digesting my food, and my body breaks down my own intestinal lining. So I basically have holes, burns, etc., along my intestines. This causes a lot of pain, and sometimes I don't like to eat because having food move along my intestines is too painful. Colitis is a type of inflammatory bowel disease (IBD), which increases your chances of colon cancer and there is a good chance I'll eventually have to have my colon removed some time in my life (they just cut it out and attach your small intestines to the exit). If you know what IBS (irritable bowel syndrome) and all the problems that presents, just times it by 10 and you've got IBD.

I also have asthma, which during bad pollution and allergy times, like right now where I'm living :(, makes me feel like I have the flu/sinus infections constantly. On the plus side, people have stopped bothering me recently to do stuff because they hear my voice/cough and think I have some horribly contagious virus that they don't want to catch. I'll just let them keep thinking that because I hate being nagged ha ha.

So, how have I been treating this stuff recently?

Endometriosis: Everything 1-3 months, I have been getting this shot called Lupron (which I now call the shot of death). It puts you into a temporary menopause--yep, what happened to your mom around 50 is happening to me right now. Except I haven't run out of eggs--this is a temporary thing to help kill all that stray lining all over my insides. See, the lining is alive (like almost everything in your body) and it grows because of hormones and things in our diet. The point of Lupron is to shut off certain hormones long enough that all the lining in my body will think it can stop growing . However, Lupron is a heavy duty treatment
(it's used for treating endomteriosis, fibroid tumors, and prostate cancer--I've got 2/3) and it comes with serious costs and serious consequences. I wish I had done more research into the risks and benefits before I started treatment, but now that I've started, I want to see it through.

The most dangerous and important side effect of the Lupron for me, is that it's made me very, very, VERY moody. My mood swings are scary and not natural to me. I wish I had taken the mood swings more seriously when they first happened. I don't like that a drug is inducing constant unhappiness in me. Hopefully this is temporary.

Unfortunately, my lupron treatment flung me into more pain and another bout of a colitis flare (during a flare, you have more tiny holes and burns in your intestines). The goal of treating a flare is to lessen those burns/holes and thereby lessen pain and symptoms. To treat it, I take a little, disgusting, nasty tasting and weight gain inducing pill called prednisone. It's a type of steroid, and it acts by reducing swelling in the body (while swelling is part of damage and repair process of your body, constant swelling actually causes more damage and impedes healing). I have to take about 60 pills, through a month, 3 a day ten days, 2 a day ten days, 1 a day ten days. I'm almost half way through it, and all I have to say, is it tastes like crap :(.

I might be going home a couple weeks because the pain from endometriosis and colitis have really diminished my cope-ability. I have always prided myself on my independence and ability to care for myself. But diseases can happen to anyone and they're a part of life. I am glad for the support I've received and the medical options available, though I must say I am extremely disappointed in the lack of research into endometriosis. I have started drinking a ton of raspberry leaf tea, as a type of homeopathic treatment, and am hoping it may help. And I hope that this explanation of the current situation and my treatments are easier to understand. I really don't know how else to explain it, but thanks for reading no matter what!


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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health, struggles, and happiness.