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Re-blogging a blog that I re-blogged and then promptly lost…

Re-blogging a blog that I re-blogged and then promptly lost…

I am laying low in my bedroom today, and after a good cry and a shitty nap, I opened my laptop to Pinterest. Someone pinned a blog post called How To Receive Better Care in the Emergency Room (with a chronic illness) and as I read it I saw that I had ‘reblogged’ this in June of this year. ?? I don’t see it here, and the site won’t let me re-re-blog it so I’m going to link it here. It’s definitely worth the read. As a new sick chick I saw my fair share of ER rooms. Everything was new ( to me ) and extremely terrifying. As you get more advanced in your years with chronic illness, you become more seasoned and the emergency room is a place of nightmares. Just kidding, not nightmares but a pretty big side order of judgement, disapproval, and suspicion. And that really stinks. No one, who has a legitimate life-long relationship with pain and the fear of premature death by disease, ever goes skipping into the ER sniffing around for meds. And because this is a practice of many drug addicts and recreational users alike, we get the fallout, we meaning the chronically ill. I will ride out the most terrifying of symptoms now, while thinking “ok, am I dying? or is this just another torturous event that I live through?” often times rolling the dice, instead of going in and being in severe pain somewhere other than my home, only to wait 8 hours and then be treated like shit. I’m almost going off on a tangent here.

Without further ado, here it is. [all of the above verbage is just my experiences and opinions. not from the post that I’m re-re-blogging.]

 

What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)

A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.

Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable: READ MORE HERE

 

 

Starting to write again. I think.

Starting to write again. I think.

I have just done nothing with this blog for so long. I’ve thought about just shutting it down, or letting it float in the inter webs forever; my rants forever floating…hahaha. I’ve got the itch to write again. The excitement that builds up when you think about it, changing blog themes incessantly getting all pumped up to write something, anything!

That’s where I’m at right now. I know that I want to jump back into advocacy again: I’m SO tired of dermatomyositis getting no play out there in the land of awareness. Bratty foot stomping here. So, if I want things to change I need to try and change them. And here I am. ??

 

Here’s a link to a depressing article about DM and the onset of cancer with specific antibodies present and lots of very scientific-ey words. Bam!

and here’s a picture of a cute puppy. Just because. 

This cute doggy was found at The Meta Picture. Ok, I’m going to read for a while and crash. Big time Friday night over here!!

 

 

 

Finding Out Who You Are

Finding Out Who You Are

I saw this quote today and it sparked a memory…

Last day of infusions, March 9, 2011I took this photo from the passenger seat of our car one morning on the way to the University Hospital upstate. This shot turned out to be our last trip up although we didn’t know it at the time. We drove up for 3 consecutive days each month so I could get IVIG and solumedrol infusions. The infusions were long (8+hours) and they really made me feel sick. The headaches that I got while sitting in the infusion chair were some of the worst I’ve had. Looking back on that time in my life it was so crazy that for the most part I don’t think I really acknowledged  the levity of the situation; just how sick I really was. I went from a walker to a cane so I knew the IVIG was helping me. I was carrying an extra 80+ pounds on me from the steroids and the water retention I battled constantly. I remember being stretched so tight that my legs would actually rip open. In the moment; in all the moments over the years, I think my brain sets itself to daily survival-mode and not really thinking that far into the future of what-ifs and what-could-happens. After this last trip up I got really sick. My brain and spinal chord swelled and I ended up in the hospital. I ‘woke up’ on the third day there but it turns out I wasn’t sleeping, I was awake but didn’t know it. Big C told me that it was like I was there but not there. So when I ‘woke up’ I was sitting up and suddenly I said, whoa! It’s really bright in here! And he told the nurses I was back. When I think about it, it just seems like a dream to me. And even though it’s scary as hell, it feels like it happened to someone else.

I had a moment when we were driving up and I took this particular shot. I remember it. My first thought was wow, cool shot! Haha! Got it on an iPhone too. 🙂 Then I was thinking ‘this is my life’. I remember that. A sudden burst of reality. I am sick. I’m still me but a whole new different me. A me that gets up at the crack of dawn to drive to a hospital, not to go to work. I’m in the chair. I’m not attending to a patient, I AM the patient. A moment of pure clarity while I aimed my phone at the sunrise.

On that day I was 5 years sick. You’d think I would have realized this already, right? I think with chronic illness comes so many different emotions, constantly changing, that sometimes you don’t know if you’re upside down or right side up. Epiphanies hit you like a brick in the face and then fade away leaving you open and surprised when another moment hits you.  You really do find out who you are somewhere in the chronic journey. Whether you like it or not, you’re a fighter.

 

My Last Visit With My Rheumy

My Last Visit With My Rheumy

 

I’m still sitting out back drinking my coffee and thinking. In a few hours we’ll be heading up north for my last visit with my rheumy before we move. He was my second rheumy and the first doc to really show that he cared. I was SO excited when he said he’d take me on as a patient. When I started infusions it was in his hall. The infusion nurses went on and on about just how awesome he is. I really, really hope that I can find one after the move that comes anywhere near his level of professionalism and kindness. I hope I don’t cry, lol! I guess we’ll see. 🙂

 

 

 

Found an old blog…

Found an old blog…

It’s a beautiful day here today. It was supposed be 60 degrees today but I think it got warmer. I sat out back for a bit today to try and get some sun on my Elvira skin. I swear I thought I heard it sizzle. Ssssss, haha it’s hard being this pale. I freckle and burn like crazy. Anyway, I brought the laptop out back and made a scrapbook page of the Nugget. One of my all time favorite pics of her standing on our lawn with her arms stretched up in the air like ‘YEAH!!!’ She’s so dang adorable. She’s also the most devious of the grandkids. She plots and plans and she has a really bad poker-face because I can always tell when she’s scheming. I guess that sounds really bad, I mean when she’s scheming to blame something on her sister, trying to sneak an extra cookie, etc. Normal 4 year old plotting and planning.

                                                             I used Under The Boab Tree kit by Marta Van Eck Designs
Haha! I laugh each time I see this picture. She brings me so much joy, that kid. Then the gnats or whatever the heck they are were dive bombing me so much I had to come back inside. I think this burst of good weather has brought all the creepy crawlies and fliers out of the woodworks.
So, I started a new blog for posting my scrapbook pages on blogger. It’s prompting me to keep on scrappin. I just love creating something, it’s a good feeling. Anyway, I found a blog that I started right after I got sick . Wow…I know I’m not a writer, like at all, and this sentence proves that but oh my. I’m reading through it and I am SO angry. Which is normal, but it’s just trippy to read. I wrote it never intending to publish it, it’s like a journal. I’m thinking about going through it and removing names and publishing it. Maybe someone who is recently diagnosed can relate to my angry ramblings. I dunno. OK, I really have nothing new to say…Hope whoever’s reading this is having a good day, and that you have sunshine without a million gnats.
Until next time,
The Positive Aspects of Chronic Illness… with a side of Poetry

The Positive Aspects of Chronic Illness… with a side of Poetry

Friendship, support, laughter, tears, empathy, encouragement, pumped-up, sometimes chided, love, celebrating, stories, mental hugs, strength, me too!s, vent sessions, pre-approved pity parties. This list could go on and on and you know what? I should make a complete list, as if it could ever be complete, a list of everything that I have gained in my life since I ‘lost’ my health.

I’ve had a few people ask me what, if any, good things have I gotten out of this whole chronic-life experience and I don’t even have to dig around to find one. The people. The women and men that I’ve met since 2006 are amazing. Amazing! The most understanding, giving people I’ve ever had the pleasure to have known. Somewhere in the mix I have become a better person myself. I wasn’t so bad to begin with (tooting own horn here) but I really feel that I have become a better person by going through this whole process.

Tolerance. I have so many friends now who are different than me.  We tend to gravitate to people who are ‘like’ us. People that we meet in our lives, say through work or friends, we make friends with the ones who are most like us. Politics, religion, city or country, rock or soul, baseball or football, coke or pepsi. It’s just the way it is. That seems kind of silly right? But it really is how we find our mates in life and the people that we trust the most.  When you have a large group of people with the one thing in common that is so extreme; disease and suffering, all of those other factors just drop off. We get to learn about people who are different than ourselves. I’ve learned that I STILL love some people after having to endure the political onslaught that rolled down my newfeed pre-election. HAHAHA oh my. You know who you are 🙂 Just using politics as an example, in the ‘real world’ i.e. pre-sickness, I probably wouldn’t sit down with someone with a zest for politics at the cafeteria at work because, hey, I would have to smile and nod while thinking ‘are you kidding me?’ And you can’t really start a friendship when you don’t have that common interest. Here’s where it gets good. When disease is the common interest, we learn to support, empathize, and build each other up for those really hard times. All of the other stuff falls off to the side and we get to know someone we might not have otherwise. Bonus! How lucky are we??? And what a way to be able to see people as a whole. Tolerance. It’s a good thing!

Third: understanding people better. I think that because of our loss, we gain a better understanding of all people. Our families that have to put up with a non-stop barrage of doctors visits, stuck in the bed times, seeing us at our base; worst and broken, fearing for our lives when we are in the hospital fighting for them. When you first get sick you think it’s all about you. Soon you realize it is far reaching and affects everyone who loves you. I can forgive myself now for being sick as it’s not a punishment. I can forgive my people who at times have been cruel though only through ignorance, and that went away pretty quickly as everyone wanted to learn all about the disease and what they couldn’t grasp on paper they got to witness first hand with someone they love. Love is the word that keeps popping up and man am I loved. And I love so strongly now, how could there have ever been another way??

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OK, I want to share with you someone I met the other day. She has RA (rheumatoid arthritis) and writes the most awesome poems about her experiences. I sent her a message and asked if I could share one here and she said, yes! She is a very cool woman who I’ve no doubt that we will know each other for quite a while. You can just tell when you talk to someone that you will be friends, but instead of shrieking that out like the child that you are (meeeeee) you play it cool and use your big person voice and whatever social skills you have learned thus far. 🙂 Don’t be afraid Donna, I’m not a creeper or a stalker. he he he he

Here’s a poem that I loved, and felt it. And am going to share it with you.

Giggles Over Tears With RA

 

Sometimes I just want to turn RA off for a while,
One little switch could make me smile.
There are other things I need to do,
And other people who need me too.
I’d produce these switches and give them away,
To anyone suffering in any way.
Just turn off all pain and flip happiness on.
It’s my perfect invention that can’t go wrong.

Check out her page on Facebook

just click the link below

Giggles over Tears with RA

 

A nightmare come true-speechless

A nightmare come true-speechless

I’m sick. I know this much. My headache is finally gone, it feels gone.  Is it gone?  I keep rolling over, trying to go back to sleep.  He’s shaking me. Do you know who I am???? Over and over again.  I just pull away.  All I want to do is sleep while I can.  I can’t feel the pain anymore.  You’re not making any sense!!! I can’t understand you!!! He says.  I look at him and I don’t know his name.  I didn’t know I was talking. Wasn’t I just sleeping? Why does he keep waking me up? I realize the importance of his questions.  He is frantic.  His eyes are wide. I love this man, I know this.  But I can not tell him his name.

He is trying to push sweats on over my shorts.  I’m taking you to the emergency room. I’m pushing his hands away.  Do I have clean underwear on? I’m frantic now too. I’m scared. Yet I’m worried about my underwear. I’m trying to talk but no words come out. Just strange sounds.  My daughter comes into the room.  She looks so scared, I feel so bad.  I’m scaring everyone. Stop it!  He asks me, do you know her name.  I know I have to get this right.  It’s important. I say a name. It’s a word!! I said something! But they both look at me.  Sad.  I got the answer wrong.  Now I’m trying to get ready to get in the car.  I’m freezing.

Hey Mom? I turn around real quick and I see my son.  No, I say.  Then I say, I’m ok.  The words came out of my mouth.  We are driving fast, I think I’m crying.  I know that something is really wrong, and I’m scared and I hurt now.  I feel the pain, and the air smells cold.  It’s freezing my nostrils and I can’t stop crying.

We’re here.  I don’t really know what they’re saying.  She says, can you answer me?  I open my mouth and I’m straining but it doesn’t happen. He’s pushing me through the double doors in a hospital wheelchair.  It’s triage.  More questions, more straining. By now, I’m tired.  I just want to go to sleep.  The next thing I remember is the nurse with the mask on.  It covers her mouth but it also has an eye shield. It presses so hard that it pulls her bottom eyelids down and she looks scared.  This is not good.  Needles, IV’s being poked and prodded.  I notice that there is no color.  I’m seeing everything in black and white and I don’t want anymore.  I want to go home.  Doctor comes in and I can’t talk to him either.  This is a freaking nightmare.  He has sad eyes and he is short.  Very small.  He tells me they have to do a scan and then a spinal tap to rule out meningitis.  No, I don’t want this.  He reads my mind and tells me it has to be done.  We have to go to another area to do the scan, and it feels like the room just spins around like in the old TV shows where you pull a book and whoosh.  You’re on the other side.  They have something wrapped around me and tell me don’t move my head, lay still, as they pull me sideways and I slide down onto another table.  I see people on the other side of the glass.  I can’t understand what’s happening.  I can’t hear.  Everyone looks urgent, harried.  I feel like I’m in a bad dream.  I don’t see any color, just black and white.  I’m back with Big C.  I know he’s Big C.

*Then there are two women who are pulling me down a dark hall.  There is a guy who is mocking them.  A Russian lady is talking to me as the other two are climbing under my gurney and wrapping this giant blanket around me like swaddling a baby.  They have a gleam in their eyes.  They are up to no good.  I start fighting them, pulling against the blanket trying to get out.  They will not get me in that room.  We are in some kind of a basement, and what they want to do to me-I know that if they get me in there, I will be dead.  *(I find out later, this part was a hallucination that I had)

I open my eyes and the doctor and the nurse with the uncomfortable mask are prepping me for the spinal tap.  He tells me to grab C’s arm and his and pull.  Harder!!! No push against my arm, harder!!! I am screaming.  I had one years ago, I don’t remember it hurting this bad. The room is all yellow and dark.  I want to know why the lighting has changed after everyone got on masks.  We are quarantined. Everything is so surreal. He is saying they have to be sure.  We have to wait for results.  That’s all I remember. I remember it now like you remember an awful dream.  The one’s that seems so real it gives you a stomach ache.

I woke up in a really large room.  It was bright and sunny and my Big C was there.  I’m like, what happened?  You have meningitis, he tells me.  I’m in a room that is droplet something, can’t remember the term.  But everyone who comes in has to wear a mask and gown.  I’ve got cooties.  At least I don’t have that awful feeling of surrealism spooking me out.  I can talk.  I am scared, but in the oh-my-gawd-how-the-heck-did-this-happen-way. I immediately remember the women, and the Russian, and the guy, I find out that I had a hallucination.  They had actually sent me to get an MRI and I gave the techs some trouble and was “making noises’ and kicking the inside of the machine.  I was so embarrassed!! C said don’t worry about it, you were not you and you didn’t know what the heck was going on.  I got the MRI done a few days later and me and the tech had a laugh over it.

I ended up staying in the hospital for a week.  I had meningoencephalitis, and am just hugely thankful that no major damage was done and that I am here in my bed, typing away. I’m really tired, feels like my ears are plugged and they are ringing at the same time.My brain fog is so thick you could cut it with a knife.  But I am thankful, so very thankful that God doesn’t want me yet.  There still things for me to accomplish here and I’m glad to know it.

My Gift

My Gift

Yesterday was the Bean’s birthday.  She woke up early and there was a gift from her momma on the kitchen counter waiting for her.  Wow! She said when she saw it.  A present!!!  I told her, yes, momma left it there for you to see first thing in the morning!  Well, she was excited as she LOVES presents.  What kid doesn’t?  Last year we had 2 birthdays for her.  One little family one on her day and then the big one on the weekend.  Well, after that it took us at least 2 months of telling her every day that it wasn’t her birthday, every day.  It didn’t help that she’s a Sproutlet and that dang Happy Birthday show with Chika is on each day.  Confused the heck out of her and was more proof that everyday was her birthday and Grampa and I were full of it.  Soo, this year we decided to tell her happy birthday, she’d get a gift from mom and we’d save all the festivities until the weekend party.

She has decided that she doesn’t want to be 5.  She doesn’t want to get any older actually.  She wants to be 3 so she’s closer to her sister’s age, but still older.  She happily ripped open her gift, and loved it.  Blueberry Muffin, a doll.  Now her Strawberry Shortcake has a friend! She loves it.  I love her. She is such an amazing addition to our family, and to our lives.  Each day I thank God that she is here.  My heart overflows with love for her.  She isn’t just special needs I often say, she just special.  Ok, here’s the thing.  We were getting her ready for bed and I was blabbering away at the Big C about something inconsequential and she pulls on my sleeve and says, “Yamma, You are my gift.”  Just like that, out of the blue and straight out of her precious 5 year old heart.  I almost started crying.  She’s amazing.

Thank You Lord for blessing me, again and again.

Bean's first day here! 5 years ago...
Dark Day

Dark Day

I woke up this morning just feeling the depression before I even had my eyes open all the way. I’ve been battling it for weeks now, but today is/was different. I felt like I’d already lost the battle and I hadn’t even gotten out of bed. I know this is a chemical thing, and I also know it is very selfish of me to entertain it, I just feel powerless today. My pain is very high. I feel poison running through my veins. It’s the only way to describe this feeling; I can feel it running through my veins. I’m itchy. I’m restless. I’m a mess.

I have so many things to be thankful for, and to be grateful for. My family. Are. Amazing. My partner in this life is a saint to be putting up with even a fraction of all the shit I seem to be throwing around lately. He is my heart, my reason. The Bean is amazing as always. I feel the most guilt over her. I feel like I am not giving her what she needs. I’m always sick. I imagine us going to the library, to the park, heck, even just to the store. But ‘Gramma is sick’ is what she hears. Big C corrects me and shows me just how happy she is. My mother is always there for me and Bean. She takes her to the park the library, the mall. I am forever grateful.

I thought if I sat down and tried to put into words what is making me itch, causing me pain that i would feel better. I think the only way I’m going to feel better is to consciously choose to be happy. That sounds so simple. And impossible today. Is this depression? Or is it guilt. I feel so guilty for being sick all the time.

Where Did the Summer Go?

Where Did the Summer Go?

I have been pretty quiet I know, it’s been a weird and kinda crazy summer.  I finally got my diagnosis (dermatomyositis), got my first treatment; landed in the ER a couple of days later with WORST SIDE EFFECT EVER, then went on to have a series of strange days.

I woke up in the mornings and didn’t have glass feet!  Soon, I was walking without my cane! (this is huge as I’ve been attached to that dang cane for a while now) All of those little cells from 1,000 healthy people were coursing through my veins waving there little cowboy hats and yellin Yeee Haaaawww! and I’m gonna git you sucka! to all of my Good Cells Gone Bad.  And they were winning! I had days where I felt great.  I could load and unload the dishwasher and not be bed-bound for 2 days after. This was actually the case before the IVIG.

So- here’s where I’m the lame-o.  After going in to the ER in the back of an ambulance, I freaked out that I wouldn’t be able to have another treatment. I scheduled an appointment to visit my rheumatologist at the hospital but failed to schedule myself the next round of IVIG.  So, when I meet up with the doc, he tells me no, I can get more treatments-they can pre-medicate to try and prevent the headache of the century and all the vomiting and oh, by the way, when do you go back?  I’m sitting in the chair in his office going, uhhhh.  Gee, I didn’t schedule an appointment… So he goes down the hall and brings one of the infusion nurses into the room and tells her to squeeze me in. Try as she might, it’s a no can do. Their chairs are booked solid. So, I”m having my next treatment on the 21st, and oh man.  I definitely have no stampede of little warrior cells going on now. Probably just one little lone ranger and that’s why I’m having a few good hours here and there.  Other than that, I am in full flare mode again.  Rash, muscles constricted to the point of PAIN and so many weird little things that go with the package.  I had to talk myself down from an anxiety attack this morning.  I felt like I was going to stroke-out with the icepick that was pushing through my skull.  So, yeah.  There’s my illness in a nutshell for the summer.  I left a lot out because it’s BORING and blah blah blah.

OK, now for some good stuff.  We got a new puppy!!! His name is Brutus and he is the most awesome little dude ever.  I say little dude, because if our pets could talk he would totally have a surfer thing going on man, catch a wave dude, awesome, tubular even. And he would talk real s-l-o-w.  Yep, that would be Brut Bruteman.  That’s what I call him because obviously I have problems.  But it suits him.  I call our other dog Pete, Pete Peteman so it was a natural progression.  I guess.  Wanna see some pictures? No? Alrighty then, here we go! (like when someone comes over right after you’ve been on vacation and you make them look at all 350 shots of random buildings and trees in a town they’ve never been and could care less about, fun!!) OK, NOW here we goooo!!!

The Bean decided she wanted to hold the bowl while Brutus ate some.  It was hard to say no…

 

 

Look at those eyes! He is going to be one spoiled doggy, for sure.  It’s hard to deny a face like that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This is the infamous Pete Peteman.  He rocks.  And he keeps the deck held down at all times.

SAM_0079

Alright, I’m off to bed.  Today sucked in terms of pain and icky feeling, I’m hoping tomorrow is a better day.

Until next time

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