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. 🙂

 

 

Wednesday Words – Fears & Phobias

This week we’re talking about fears and phobias. Oy vey, this was a hard one! I feel like the older I get, the more fears I have. I also feel like that’s backward. Shouldn’t my fears decrease as I grow older and wiser? Nevertheless, here’s a list of my top phobias in no particular order.

Big Scary Bridges – My yearly writer’s retreat is waaaaay up in the tippy top of the Upper Peninsula of Michigan. It’s gorgeous up there and last year was a blast. The one drawback is that in order to get to the UP, though, is that we have to cross the Mackinac Bridge. Although the Mighty Mac is pretty, she’s also big and scary. It’s the fifth longest suspension bridge in the world and the roadway is 200 feet high in the center of the bridge. When I’m crossing her I have visions of high winds blowing cars off into the water. (Hey, it happened!) Last year when we crossed the bridge it had been nearly 17 years since my first and only trip across the bridge. I think I did pretty well (no panic attacks, no crying, no hiding my face or popping of Ativan) but it still scares me. I almost enjoyed crossing it on the way back home and even took photos… But yeah, I’ve already told the retreat girls that if we take my car this year, I can drive as long as someone else drives us across the bridge.

Death of my Parents – I honestly don’t know how I’ll handle this. I fully envision winding up in a mental hospital over it when the time comes. I can’t imagine life without my parents.

Never Being a Mom – If you know me well or have read this or my previous blogs you know I want to be a mom more than anything. I’m totally afraid that I’m running out of time to have a baby the natural way and that I’ll never be able to afford to adopt because I have a suck ass job and live paycheck to paycheck.

Water I can’t See Across – I’m not nearly as scared of this as I was before I went on two cruises. But I still have a healthy fear of water I can’t see across and can’t touch the bottom of. Also, undertow.

Mental Illness – I have a fear that one day my clinical depression is going to take over. That instead of conquering it, it’ll conquer me. Which also leads back up to the never being a mom fear.

Bats – No, just, no. Especially when they’ve entered the space bubble of my home. Not okay. Nothing you can say will change my mind on this one.

Not Being Good Enough – Gee, could this post get any more depressing? Ugh! I worry that I’m not good enough at my job, my relationships with people, my crafts… Basically everything.

Okay, enough of this topic for me… what are your phobias? Leave a comment below and be sure to check out what my girls Bronwyn, Jessica, Leigh, Tess, and Kris have to say about phobias and fears! Oh and check out Jenny Trout’s blog too… she may or may not be joining the Wednesday Bloggers group, but even if she doesn’t, she’s amazing and you’ll love her. 🙂 Plus, her new book The Bride is finally out! Wee!!

Soul Sucking

It’s been a while. In fact, it’s been so long that I can’t tell you what my last post was about. I need to blog in order to meet my goals for my writer’s group though so… Here I am. 🙂

Things are… odd. I’m still doing the job that sucks at my soul on a daily basis. I haven’t found the balance that I wanted to find which would let me do my job and still do the things I love. I’ve found that once again I’m being sucked into a void that is hard to see out of most days.

When I mention feeling overwhelmed and burnt out, the response I get from most people is either that it’s my own fault (poor boundaries, a bad attitude, etc.) or that I’m just not cut out to be a social worker (aka I’m too weak to do the job). I’ve known for a while now that my current job isn’t for me. The only reason I continue to do it is because I have bills and responsibilities and therefore can’t just quit my job like I did in my twenties because I’m unhappy. If I could walk into my office tomorrow and say, “I quit” it would be a glorious day. But I know that quitting a job in this job market without having another job lined up first is plain stupid. So I keep working. And I keep slipping.

Getting Close

Just before 6:00 a.m. my mom woke me up because she thought that Grandpa was about to die. He was non-responsive and his breathing was very poor.

I’ve been sitting in this recliner next to my Grandpa’s bed for sixteen hours and he’s still hanging on. There were times when his breathing stopped for at least twenty seconds at a time and then would start back up again. Other times he’s asked about food and drink for the first time in about three weeks. His swallowing isn’t going so great now though so even when he’s thirsty it’s hard to get a good drink in him.

Thanks to the dementia he keeps forgetting what’s going on. He’ll say things like, “Maybe I’m so weak because I need food…” but he doesn’t understand that he hasn’t had more than a sip of juice or soup in almost a month. So we remind him that he hasn’t eaten and that seems to worry him. “That’s not good,” he says. We remind him about his Congestive Heart Failure (CHF) and that it’s not getting better but he forgets that too. He’ll say, “Maybe those pills you give me will help…” but of course in order to take the pills he needs to be able to swallow.

We got a few pills in him just a little bit ago but it was a chore. The poor guy wanted nothing to do with the Juicy Juice he’s been drinking all week and swore that milk would be better. But with CHF when the heart starts failing it creates fluid buildup in his lungs so milk isn’t exactly the best choice since it can make him phlegmy.

Mom tried explaining to him that if he’s thirsty he should drink anything that’s wet and he agreed but then decided that he still didn’t want the juice. He says, “But I don’t want the juice.” She then told him that she didn’t care what he wanted and the look he gave me made me giggle. He looked at me like, “Did my daughter just tell me no?” 🙂 I watered down some milk for him and he handled it okay but of course it didn’t taste very good anyway because his sense of taste is off. He asked more about food and other things he couldn’t have and once again we explained why he couldn’t have them and why he wasn’t going to be getting any better.

It’s basically been like that all day with lots of napping in between. He’s still in there, still the goofy old man we all love so much, but he’s fading. I really hope that he can just let go sometime tonight so that he doesn’t have to go through another confusing day like this.

He’s ready even if he doesn’t remember telling us so, and as sad as it’ll be to see him go, we’re ready too. The living that he’s been doing for the last couple of weeks really isn’t quality. He’s seen all of his kids except for one, he’s seen almost all of the grand kids and great grand kids who live in the area, and he’s even seen his brand new great grandson via Facebook who was born just two days ago.

He’s talked about seeing people in heaven like my grandma, his brother, sister and his mom. Apparently he doesn’t think his dad is in heaven though, but maybe he’ll be pleasantly surprised. 🙂 Hopefully there Gramps will be able to eat all of the Filet-o-Fish and chocolate shakes that he wants, his ticker will be perfect, he’ll be able to walk without any assistance, and even better… he’ll be able to drive again!

I’ll admit, when we moved Grandpa in with us almost a year ago it was scary. I was worried about him getting hurt or dying on me when my mom wasn’t around to help me. Despite how hard the year has been though, I’m really glad we were able to have him here. He loved being able to visit with my brother’s crazy kids when they came to spend the night. He loved watching hour upon hour of Law & Order in his own living room while knowing that if he needed help we were just in the next room instead of a 30 minute drive away. He liked having the animals around even if he eventually forgot Sly’s name and just called him Big Cat and continuously pronounced Kia’s name wrong. Even the ongoing Ketchup Saga of 2012 is pretty funny now despite how annoying it was back when we were in the thick of it. (Gramps decided at one point that Heinz ketchup was too bitter for him but he claimed that it was because the ketchup was in his words, “rancid.” When we’d explain that the ketchup was brand new he’d point to the 57 on the Heinz logo and tell us that the bottle was from 1957. This happened almost daily for a while until we switched to the much sweeter Hunt’s brand. That eventually went rancid too and he just stopped eating ketchup.)

Sure, it’s been really, really hard on us. My mom not only had to quit nursing school just six weeks shy of finishing (she did get her LPN though, yay!) but she had to stop working and was pretty much here at home 24/7. I gave her respite as much as I could but of course with my own job I couldn’t do it as much as I would have liked. Hospice didn’t get into the mix until just a few months back and although they did help out and let her get out of the house a little some days, I wish I’d been able to help more or that other family would have helped more. But, what’s done is done and I know that my mom and I have given Gramps all he’s needed not just this past year but long before that. There’s no doubt in my mind that he knows just how much we love him.

Life for us is about to make a huge change again. Mom’s going to be able to go back to work, and we’ll go back to living in this house without a hospital bed in the living room. There won’t be an oxygen machine, syringes of morphine gel, and we won’t have to take turns leaving the house so that someone can stay here to Grandpa Sit. Of course we’ll miss him dearly, but we’ll also have so many great memories to keep in our hearts and for me at least, that’s the most important part and what I’m choosing to hold on to right now while sitting here next to him. He’s a pretty awesome guy and all of us who know him are blessed to have him in our lives and in our hearts.

Death is a natural part of life. Rejoice for those around you who transform into the Force. – YODA

10/13/12

F is for Fear

I have a lot of fears.

I’m afraid of tornados, hurricanes, really bad thunderstorms, gigantic bridges over water, and the word “panties” to name a few.  I’ve been known to do a freaked out heebie geebie dance over spiders before and after squashing them into oblivion with a Chuck Taylor.  I’m also terrified of the idea of people who I love dying.  I like to think that aside from the panties thing, most of my fears are pretty common.

Some of my fears are kind of weird though.  Like, I’m afraid of heights, but I love to fly, love roller coasters, and really dig going up in super tall buildings like the Sears Tower (Yes, I know it’s now the Willis Tower but it’s always going to be the Sears Tower, damn it!).  I’m afraid of being in water that I  can’t see across, but I love being in and around water.  I know, I’m a special girl.

I don’t like spiders, but I can generally work up the courage to kill them or suck them up in a vaccum.  The water thing is still near the top of the list, but I managed to go on a multi day cruise without anything close to a panic attack.  When a bird is in a store, I hate it.  Bird houses in zoos where you’re supposed to walk through and gaze at the birds and they can fly around you are a huge no-no in my book.   But if there’s a bird outside and it doesn’t invade my space bubble, I’m not going to go running away from it screaming or anything like that.  I guess what I’m trying to say is that I have these fears but for the most part I can face them.

There’s one fear though that I’ve discovered that I simply can’t face.  In fact, it is by far the most paralyzing fear I’ve ever experienced and it’s one that I never knew I had until I had to face it.  It’s such a true fear that even thinking about writing about it in this post is starting to freak me out.  I’m sitting here bouncing my legs nervously and deep breathing just in anticipation of explaining what the hell I’m talking about.