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broken links and weirdness

broken links and weirdness

It’s been so long since I’ve blogged regularly; there are a ton of broken links here that I’ll be fixing. I was scanning through earlier and I saw that one of my ‘new sick chick’ rants had a link for viagra. hahaha! I don’t know if it was a link that changed or if some bot got into my account, but if you see any links for viagra or viagra level weirdness, know that it’s not me. lol

 

 

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.

 

Just Checkin In…

Just Checkin In…

Hey all. It’s been a strange week, sad, emotional. Leaves me feeling grateful which makes me feel guilty. Lots of feelings going on. It’s Friday at about 10 to 6 in the evening and I’ve cut myself off from the news for a bit. My mind was going on overdrive and the feeling in my heart were overwhelming so I gave myself permission to tune out. 

Right now Bean’s taking a nap. She does every Friday after school so she has the energy to stay up a little late with her sister. 🙂 I think it qualifies as a ‘parent cheat’ as C and I get to sleep in a little bit on Saturday mornings. Shhh, don’t tell anyone that we are flawed parents just like everyone else! haha! She’s snoring away and although it’s cute, it means we have to get her back into the ENT doc. She had her adenoids and tonsils removed and her breathing was like night and day at night. If that makes any sense. But now she’s snoring again and I just want them to have a look see. 

Other than that I really don’t have any new news here. Life is cruising right along without any major roadblocks, so that is good. I can’t complain. I hope that you are doing well, and having low or no pain days. That’s about all we can hope for, yes? Take care. 

I’m leaving you with my latest page. I used Rebecca McMeen’s kit Waverly. I love her style, her dolls are always amazing. 🙂

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

 

I’m not an artist but I play one on tv…

I’m not an artist but I play one on tv…

Third day into Spring Break and I still haven’t sprung yet. Haha! The sun was shining today too. Ah well, there’s always tomorrow, tomorrow (I love ya, tomorrowwwww). I did get the kitchen cleaned and all of the floors swept. I didn’t even bother steam moppin as the dogs are tracking mud through the house EACH TIME THEY COME IN. Grrrr. This is going to sound pathetic but most times I just don’t have the strength to get down and wipe the mud off of their feet when they come in. So, our floors gets some prints and after a few days I’ll steam mop the heck out of them. Or tell myself that I’ll do it tomorrow….

I spent a good portion of time today working on the computer. I have jumped back in feet first with scrapbooking. This time I’m going to make it stick. It’s something that makes me happy, and I always feel good about each page when I complete it. Whether it looks good is a whole nuther matter. It just FEELS good to do something creative.

A few years ago I went on quest for the perfect photo editing/scrapbooking software.  I managed to gather quite a collection of software over the past 5 years or so. I have Photoshop and I love it, My Memories Suite which I like a lot, but there is scrapping software out there that is so user friendly it’s pretty incredible, like Craft Artist Professional 2.  I bought a couple of kits from Daisy Trail, CAP2’s site, and that was all it took to get me playing in it all day. (a lot of kits on sale this weekend for $1.99! I know! this sounds like a paid post but it’s not! I love them that much! I’m going to stop exclaiming now!) I put together a collage of me and dad which I thought came out looking very pop art-ish. I blended it in with a colored paper and made a background page which I LOVE. But since it’s our heads on the entire page, I’m hesitant to cover it up with photos and elements lol.

Aight. I’m going to take my Ambien, put on Fringe season 2 and promptly pass out without seeing any of it.

Here’s the bg page. Is it weird because it has our

heads collaged? I like it!                                                                                                  

I asked and He answered

I asked and He answered

Hey all.  It’s been a little while…I’ve been conducting an experiment that sounds ridiculous, and now I’m starting to think it is.  My PC told me a while back when I wanted to go up on my pain meds that he thought that I would be in the same pain without them as I am with them.  I thought he was nuts. So he referred me to a pain clinic and on my first visit after describing all of my pain, the doc told me he thought that I was hypersensitive to the drugs.  Whaaa??  I have never heard of this, and this guy must be a smooth talker because after a while I was nodding my head and going uh huh, uh huh. ( I just found an article that explains Opioid Hypersensitivity Syndrome or Hyperalgesia here. )

So, I am in the process of dosing down off ALL pain medicines to see if they are causing me pain and making me sick.  Right about now I’m thinking, um no.  I am close to being off of them (this is the last week) and man that was fast.  He had me taking 30% less each week.  I had to put a clonidine patch on to help with the withdrawal.  These are the times that I question what the heck I am doing. I am in pain, and I’m in withdrawal, and I am barely functioning. As my kids say-this sucks.

But, I didn’t get on here to whine. Well, maybe a little… I wanted to write about my experience the other night.  My jaw was killing me. Like a 9 on the pain scale. And my pain scale is completely different now.  What was once a 9 is now like a 4, if that makes any sense. This pain is from a tooth gone completely wrong. A wisdom tooth too. Anyway, I’m holding my jaw, I’m crying and I’m thinking I can’t believe after everything I’ve been through I’m being taken down by a tooth!  So, I’m hurting and there’s no amount of orajel that’s going to give me any relief and I start to pray.  I’m asking God to please help me.  I can’t even see the pain is so sharp.  I have to be able to be there for the Bean. Please help me. And, my pain just diminishes. Just gradually easing up and poof. Gone.  I praised Him and thanked God, thank you, thank you!!

Sometimes I forget to ask God for help. Sometimes I feel selfish when I do.  He is showing me that He does love me. Unconditionally! I just wanted to tell everyone to ask God for help when you need it.  And yes, there are times when we don’t get an answer, at least that’s the way we see it. But I think that is the answer. Some things we have to figure out on our own to learn something.  Make sense?  Maybe 🙂

Until next time

Please Stop The Pain For Chronic/Intractable Pain Sufferers

Please Stop The Pain For Chronic/Intractable Pain Sufferers

I know, I’ve been invisible for quite a while now.. Still battling depression, it’s an ongoing thing. I need to get back ‘out there’ and posting is one of the things I need to do to feel good. I have a list of people I need to call/write/hug, and a house to clean, ha!
In an effort to get back into the swing of things, I joined a fantastic site called Chronic Intractable Pain and You. It is an amazing source of support, and a place for advocacy for chronic pain sufferers. I’m going to make this post short and sweet, and place a link to sign a petition. Please at least check it out, read it and if you agree, please sign. We need 10,000 signatures and are at around 900.
Thanks in advance, and I will be back!

Please click on the picture below to take you to the petition =)

Make a wish!
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...
Counting my blessings

Counting my blessings

I love this shot.  I really kicked up the contrast and colors, but even with no touch up, it is a pretty flower.  These past few months for us as a family have been extremely challenging.  Lot’s of illness, family issues, money, surgeries, pain, I need to come back to simple to get through all of this.  As usual my Big C is amazing, incredibly helpful, he is my biggest fan.  I’m his although he says he loves me more.  pffff, haha.

I’m recovering from one of the worst intestinal bugs I’ve ever had.  It’s been about 2 weeks and I’m FINALLY starting to be able to keep food down.  Well, I lost weight!!  I’ve been stuck at a certain weight for 3 months now and this illness got me down 14 pounds, woot! I wouldn’t recommend the ‘barf and poop off the pounds plan’ but I got it for free so I’ll take it.  🙂  I went through a high fever and much pain and my mind would roll and roll whether I was awake or not.  I remember thinking, Is pain an emotion?  At time when the pain and sickness is so bad that I don’t think I can do it for one more minute-I can feel the depression like a physical pain. And when my body starts to heal of course the cloud gets lifted and even the pain doesn’t feel so bad.  You’ll have to excuse my ‘whoooaaaa’ little epiphanies, my brain is running behind a little bit.  I’m taking it minute by minute and getting back to simple. Family, flowers, all the things that make you smile.

OK. I’m coming back. Again.

until next time

Video killed the radio star… *UPDATED-with link*

Video killed the radio star… *UPDATED-with link*

But not the 80’s tv and movie stars.  What do George Wendt, Jason Alexander, Tonya Harding, Philip Michael Thomas (Tubbs), Kelly McGillis, Katerina Witt, Roger Moore, Ricki Lake, (I’m not done yet!) Corbin Bernson, Lou Ferrigno, **Dolph Lundgren, Robert Englund (Freddie Kruger-eeeek!), Darryl Hannah and Peter Falk all have in common???  Singing! This rockin video, Let it Be. No really, let it be. I hope you enjoy this as much as I did.  Wait for it….wait for iiiiit…AIR GUITAR! Weee Hooooo!!!  Enjoy!

Oops, I didn’t know I couldn’t use the video-they have the embed code right there under it…

Anyway, here is the link to view it on You Tube. Enjoy!       Let it Be

**Does Dolph look exactly the same as he did back in the day?? He actually looks a little bit younger to me.