Brain Dump: Auto Immune Edition, part two

A few months ago after years of uncertainty and shitty doctors I finally got diagnosed with Seronegative Rheumatoid Disease. I’d known for a year that I had a form of inflammatory arthritis and it sucked, but finally learning that it was rheumatoid was hard. RD is a full body immune system disease with no cure and the ability to disable me. It’s scary as hell and although I’m glad to finally have a name for it, it’s very overwhelming too.

This disease is kicking my butt physically and emotionally. I feel like I’ve been an awful friend/daughter/sister/aunt/coworker lately because my life revolves around flares, meds, and trying (but failing) at being “normal.” It may not always seem like it, but I really am trying. It’s just super hard now that I know it’s never going away. In the past year I’ve tried five different treatments and none of them have worked as well as we want them to. My current cocktail is working to lower my inflammation, which is great, but I still feel like crap all of the time, some of my symptoms are getting worse, and new symptoms keep popping up. It just sucks. There’s also some really scary things that could happen to my body but I’m not ready to think about those too much. And I’m sure some people get sick of hearing about it, but until you have an incurable disease you have the privilege of being annoyed by things that are uncomfortable. I don’t get to turn this off though, so I’m going to keep sharing and hopefully educating others. The pain, fatigue, brain fog, and emotional toil are ridiculously hard to deal with. But I try my best.

The week I found out about my diagnosis I was pretty sad. Like, “Holy crap I could be physically disabled by this and then what?” kind of scary/sad. It also meant having to let go of some dreams that I have that simply aren’t physically possible anymore and well… that sucked. Like my chances of having a kid the traditional way… gone. My body is too old and too sick to handle that. Then there’s the fact that I can no longer be on the Be the Match donor list for bone marrow. I’ve been on the list for 23 years and this week I had to tell them that I had to be taken off because people with auto immune diseases can’t donate.

So in the midst of my first round of the grief cycle I got a French Bulldog puppy. Vinnie was a totally expensive impulse buy and by getting him I broke my promise to the Elder Cat that I wouldn’t bring a pup into the house until after she dies (she just turned 17). But it was one of those moments when I saw his sweet little face and just knew he was supposed to be mine. Not to mention the fact that I kept thinking, “What if I wait for Kira to die and then my body isn’t able to handle a puppy?” I wasn’t able to give up that dream too.

He has been a pain in my butt and the joy of my life. Even Elder Cat tolerates her new large baby brother most of the time. If there’s one thing this disease has taught me, it’s to not get so upset over the little things. Yes, my room, and car and desk at work are utterly messy, and yes it bugs me. But a messy room isn’t going to ruin my day, I can’t let it. Sometimes when I’m in too much pain or I’m too exhausted to even think about cleaning, all that really matters is resting and trying to find comfort. If Vinnie pees on the floor, or chews on something like my table, it’s annoying (sometimes really annoying) but I remember that he’s a baby, he’s still learning, it’s not the end of the world. Then when I’m feeling awful and he’s snuggled up with me and loving me unconditionally or he makes me smile when I’m feeling horrible… that’s what matters. That doesn’t mean, however, that everyone else has my laid back attitude though, and I know that it can be hard to deal with me… I tell Vinnie pretty regularly that Grandma is going to lose it if he doesn’t stop with the occasional pee accident or chewing episode.

I bought a cane recently. I don’t use it regularly yet but I know there are times it’ll be helpful. I have my grandma’s old cane and I used it once but I figured that if I’m actually going to embrace using a cane on bad days, it’s going to be a cute one, not grandma’s old silver thing. 🙂 The weekend I ordered it I had an awful flare and when I was laying in bed awake and in pain from just going to dinner and playing Wii with my Doodlebutt I decided I needed a cute cane for those bad days. Maybe I’ll get lucky and the next medication will be the one that sends me into remission so I’ll have to keep the cane in storage. Maybe it’ll just be something to have for really bad flares. That would be awesome. But I don’t feel the need to put off something that’ll help me be more comfortable just because I’m “too young” and “shouldn’t” need it. After all, it was that kind of thinking by my so-called doctor that put off this diagnosis for the past ten years while things just got worse. If she’d just listened to me and admitted that she didn’t know how to treat me, maybe I could’ve found out about my RD when it was still mild and wasn’t as severe. Ten years ago when my pain was just transitioning from occasional to daily I was 80 pounds lighter than I am right now. I was able to go for walks, do all day shopping sprees, play on the playground and do all sorts of things that I can’t do now without it throwing me into a flare. It sucks harder than I can explain; and honestly it’s put me in a really crappy place emotionally lately. I haven’t done any writing since last June and I’ve barely done any knitting either, but I’ve been thinking about both lately so that’s good, right? Things have been crappy, but I still have hope, mostly.

I hope for the right cocktail of meds that’ll help me get some of the old me back out to play. She’s still in there, she’s just busy battling the Rheumadragon and an insanely broken immune system. 🙂 My point in all of this rambling is to say that yes, I know that I’ve been “off” lately and I really am trying to get back to some semblance of normal. But I’m having a hard time making the adjustments and I promise that if you continue to be patient with me I’m still the girl you know and love. I actually started this post back in November, but it’s taken me until now to finally post it. I joined the Cure Arthritis Crew a while back and had all of these ideas of writing about living with RD so maybe that’ll happen soon!

So in the words of Al Roker, that’s what’s happening in my “neck of the woods.”

 

Now, let’s see what the girls have to dump. 🙂

Jessica D | Deelylah| Torrance | Siobhan | Kris | Bronwyn | Jessica J

Why I suck at blogging; a tale of one boob and other medical crap.

I mentioned recently that I’d been working on a blog post about why I’ve been such a shitty blogger this year.  Aside from still being in transition and training for my new job, I’ve also been doing a lot of medical stuff.  That awful, shitty, horrible, no good, very bad doctor I’ve had for the past few years has been replaced.  Yay!!  My new doctor, so far, has listened to me and said things like, “Let’s get you feeling better first and then deal with XYZ…” and “Why didn’t Dr. Suck run this test?”  (She didn’t really call her Dr. Suck… LOL)  She also referred me to a Rheumatologist who I saw after waiting for several months and who also listened to me and didn’t try to blow me off like my old suck-ass doctor did.  So I’ve had a billion blood tests, found out that my Vitamin D is chronically low, and I have to have x-rays and start physical therapy while my new doctors work on figuring out what the heck is wrong with my body. (I’m convinced it’s Fibromyalgia but we’ll see…).  So yeah, I’ve been tired.  I love my job, but it’s hard when I’m always in pain and my boss keeps wanting to increase my caseload every few weeks.  It’s not nearly as emotionally draining as the old job, but it’s hard on my body.  By the time I get home I’m usually pretty worthless and just haven’t had any energy to blog or write or do anything fun.

I do however have a health related tale to tell you.  So gather ’round, my peeps… I’ve gotta school ya for a bit and I get to say the word boob a lot which I love.  Boob.  Boob. Boob.  LOL

As you may know, this is a big birthday year for me. I’ll be officially moving into a new age bracket that begins with a 4.  Forty comes many new things, more grey hair, more chronic pain, more wondering/worrying about ever getting to be a mom to my own kids… All the usual things. But one thing that came early was my very first mammogram.

Let me start off by saying that for years and years if someone said to me that they didn’t get mammograms because they hurt my auto response has been, “You know what hurts more? Breast Cancer.”  I don’t believe in the whole, “I’m not going to do it because it hurts” excuse because really, it can’t hurt THAT bad.  We’re women, we have periods and cramps and give birth, a boob smash should be pretty low on the pain scale as far as I’m concerned.

I called to make my yearly girly appointment and the chick was like, “When was your last mammogram?” and I told her I’d never had one she looked at my date of birth and said it was time. I didn’t flinch and made the appointment.

A week later I was there for the boob smash.

So here’s the thing… It didn’t hurt. It wasn’t pleasant, but it wasn’t something that I would necessarily avoid like the plague. The left boob did pinch a little more than the right but it was so quick that I was like, “This is it?”  Even the tech said to me, “Have you been told horror stories? Those are about the old machines, the new ones aren’t bad at all.” Really, it wasn’t bad.

So by now you’re thinking, “Why are you talking about this?” Well, because my experience didn’t stop with just one mammogram.

A few days later I got a call saying that they wanted to re-image the left boob. I figured it was because I’d moved or something since like I said, the left side hurt a little more than the right. But no, when I returned I found out that there were two spots of concern that they wanted different shots of and I was also going to have an ultrasound.

The immediate results from that said “It’s probably lymph nodes.” A few days after that I got a call telling me that they wanted to do a biopsy.

At this point I’m doing my best not to jump from zero to cancer but I’m not going to lie, I went there.  The few people who I told were mostly supportive and kept telling me I’d be fine. I’d smile and nod but in my head I often thought, “Yeah but we’ll see…”

March 3rd came along and I went with my mom to a place called the Breast Center for my biopsy. There are several different types of biopsies but I was having an ultrasound guided needle biopsy. I knew what to expect because frankly I’d googled and YouTubed the crap out of it (I have to know as much as possible about things… Education is one of my resiliency tools).

So the doctor comes in and he’s this adorable gum chewing little guy who shares the same last name as me. He explained what was going to happen and demonstrated the biopsy tool because it makes this really loud pop gun sort of thing when he takes the sample. I was anticipating it but I think my mom was happy to have the warning.

According to the doctor, the two spots were very small and he wasn’t very impressed by them. LOL um, thanks?  They were not fluid filled cysts, which would’ve been the best result so he did have to go ahead with the needle biopsies.

For the first spot he took about two cores, and the second one he took five. By core I mean he shot the hollow needle through the lump to collect a core sample. I didn’t feel a thing, but it was pretty cool to watch on the ultrasound screen. My mom is a LPN and she got a kick out of it too. LOL

Oh and when they do a biopsy they put these surgical steel markers in your boob so that the spot is marked. I have two markers in my left boob now for the rest of my life. One is shaped like a breast cancer awareness ribbon and is frankly pretty cute on the mammogram they did after the biopsy. (I wish I had a copy of it, seriously it’s kinda cool.)

I left with steri-strips on the two incisions in my boob, a dressing covering it all, and a handy little ice pack that I could put in my bra. 🙂 Then I had to wait a full week for the results.

No really. A whole fucking week. Ugh. More time to assume I was going to have cancer and wonder what my head would look like shaved and how I would explain it to Doodlebutt if I was sick. By the time I went back in for my results I was sure I had cancer.

But I don’t. Yay!

I have two benign thingymajigs (LOL I can’t remember the name and have no idea where the paperwork is right now). They don’t have to come out and basically I just have to monitor them with yearly boob smashes. Whew!

My bruises are finally gone (it took forever).  I have two little scars from where the biopsies were done.  I no longer feel the need to walk around holding my boob so that it doesn’t move too much and hurt.  LOL It was a scary situation, but I made it thorough and I don’t by any means regret getting that mammogram. Had my thingymajigs been cancer, it would have been early (too early to be felt by hand) and hopefully would’ve been treatable.  But if I’d avoided the mammogram because it might hurt it could have grown and spread and been much worse.

So the moral of the story… get your freaking boobs smashed.  Then go buy yourself a treat for being a good, responsible, girl. 🙂

 

 

Cancer Awareness Instead of Lies

Imagine being diagnosed with breast cancer.  All of a sudden you’re consumed with thoughts of possible loss.  You might have to lose your hair because of chemo, your might have to have a single or double mastectomy and lose your breasts, and oh well there’s that chance that you might also lose your life too if the cancer spreads.  In other words you’re scared as hell.

You decide to log on to Facebook to check in on friends… maybe you’ll play a couple of games to help you avoid the real world for a while.  But when you log on you see posts from multiple female friends saying that they’re going on these amazing trips.  One says she’s going on a 10 month trip to Germany while another says she’s going on a 2 month trip to Australia.  Aside from being shocked that so many friends are taking huge trips you think to yourself that it must be nice to be able to plan something that big without worrying about cancer getting in the way.

Then you check your FB inbox and come across this…

Okay ladies, it’s that time of year again…support of Breast Cancer Awareness!! So we all remember last year’s game of writing your bra color as your status? Or the way we like to have our handbag handy?

Last year, so many people took part that it made national news and the constant updating of status reminded everyone why we’re doing this and helped raise awareness!! Do NOT TELL ANY MALES!!!!!! what the statuses mean…keep them guessing!!

And please copy and paste (in a message) this to all your female friends! It’s time to confuse the men again (not that it’s really that hard to do ;]) The idea is to choose the month you were born and the day you were born. Pass this on to the GIRLS ONLY and lets see how far it reaches around. The last one about the bra went around all over the world. Your status should say: “I am going to________________for___________ months.”

The day you were born should be for how many months you are going.

January–Mexico
February– London
March–Miami
April—Dominican Republic
May–France
June– St Petersburg
July–Austria
August–Germany
September– New York
October–Amsterdam
November- Paris
December–Australia

Aside from the ridiculous overuse of exclamation points and bad grammar, what really pisses you off is that not only are your friends LYING about a trip they’re taking but they’re doing it in “support of Breast Cancer Awareness.”  You’re facing a life changing and possibly life threatening illness and this is what your friends are doing to support the cause?

Don’t get me wrong… I love a good meme just like the rest of you.   If someone sends me a way to find out what my Star Wars, Harry Potter or porn name is I’m all for figuring it out and posting it on FB.  However, this bullshit trend of saying that these meme’s are in support of a cause is just that… bullshit.

Excuse my French but what the FUCK does lying about a trip you’re going to take do to spread cancer awareness?!  I get pissed off every time one of these so-called breast cancer awareness meme’s rolls around.  The purse one was fine… stupid but fine.  The bra one was insulting to breast cancer patients and survivors around the world.  Yeah let’s post on Facebook what color our bras are in “support” of women who might not even have breasts anymore… that’s fucking brilliant!  So this time around some genius thought, “Okay, we won’t use anything that’s connected with breasts this time… let’s just flat out lie!  That’ll be SO funny!”  Seriously?

Yes, these stupid ass meme’s do get press.  But what press do they get?  A one minute blurb on the news saying that women are posting “mysterious” status updates to FB in order to support cancer awareness.  That’s it. There’s no follow up that deals with ACTUAL breast cancer awareness!  So essentially the meme is a lazy ass way to SAY that you’re supporting cancer awareness while you really aren’t doing a damn thing.

Here’s what I propose… a meme that actually means something.  One that educates people, inspires people to help, raises funds for research/treatment, honors survivors, and remembers those who lost the fight to cancer.  One that includes EVERYONE.  Men get breast cancer too, you know?  They also love women who have or had breast cancer… it’s absolutely ridiculous to leave them out.  How do you think the man who lost his wife to breast cancer feels about your so-called support?

So instead of putting a lie up as your status and leaving out men do this instead.  Complete the sentence below and use it as your status.

I’m not posting about a fake trip to “support breast cancer awareness,” instead I am truly supporting breast cancer awareness by ____.

Fill in that blank with things that actually DO SOMETHING!  Things like:

… knitting/crocheting chemo caps to donate to the local cancer center.
… volunteering at my hospital/hospice/cancer center to support cancer patients.
…donating x amount of dollars to my favorite cancer charity.
…telling my story about how I survived breast cancer.
…telling my story about how scary it was when my ___ had breast cancer.
…telling you what it was like to lose my __ to breast cancer.
…getting a mammogram!
…driving my friend to get a mammogram.
…attending a cancer fundraiser with friends and survivors.
…giving a hug to my best friend who is  cancer patient and holding his/her hand.

The possibilities are endless really, and get this… you don’t have to LIE!  As a matter of fact, you don’t even need to stick to breast cancer… use the meme to support all cancer awareness!  I can guarantee that by doing this meme you’ll be much more supportive to those who have cancer, had cancer, or lost someone to cancer.

So what are YOU going to do for cancer awareness?  Leave your answer in the comments, post it to Facebook and by all means, share the hell out of this post anywhere you want!

Blog Pimp for a Good Cause

Earthchicknits is a fellow blogger, sew-er, knitter and curly haired person (seriously, curls to make you weep!). She posted a lovely post today about a very special anniversary that she’s celebrating, that of the day she did not lose her son but very easily could have. How much do YOU know about sandhole collapses?

Check out her post “Anniversary of a Rescue” and then take some time to peruse her blog and drool over the absolutely gorgeous yarn she spins! Here’s a tease…