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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!                                                                                                  

Rockin the Steam Mop

Rockin the Steam Mop

It’s after midnight and I really have to get to sleep but I wanted to stop in and write. I always have something to say it seems, even if it’s about nothing. I still have. somethin. 🙂

So today I gave myself to do absolutely nothing until the afternoon rolled around. And I did nothing fabulously if I do say so myself! Then at 2:00 I whipped out the new steam mop and rocked these floors out. Literally. I had the rock music blaring, alternative, and I mopped 2 levels of the house and just swept down the third one. I felt pretty good abou myself. Normally I’d feel pretty bad about everyone else here though. See, when I clean I yell. lol I’d like to be able to say “I can’t help it!” but that would be a lie. We all have control over our emotions, at least to some extent. I get pissy when I clean because I start thinking “Why the hell am I doing all this? Why doesn’t anyone else do it??? Why don’t they care to live in a ‘beginner-level’ hoarders home??? And then the screams come out of me whether I want them to or not.

“Look out! Mom’s cleaning”. They say or “stay away from your mother. she’s cleaning.”  There’s no detailed explanation needed. They know that if they come into the same room with me I’m going to start exasperatingly screaming. ‘Why can’t you put a dish in the dishwasher??? Who has a bunch of cigarette butts out front?? Why can’t anyone sweep a damn floor around here?’ and so on. I really don’t like doing this, it makes me feel like a bad person.  Drumroll please….second time in a month that I haven’t yelled at anyone. Or even just yelled out to the universe, I don’t need anyone home to yell. I have been known to yell whether the family is around to hear me or not. hahaha I told Big C ‘I think I’m finally growing up! It only took 45 years.

Until next time,

 

Today Is World Arthritis Day, Let’s See Your Wave!

Today Is World Arthritis Day, Let’s See Your Wave!

Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’. 

You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD!  You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.

I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved.  Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.

Waving is a small physical activity, but a big gesture for people with rheumatic disease.  It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.

My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.

Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!

Until next time,

 

 

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

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.

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

I’m still standin. (yeah yeah yeah)

I’m still standin. (yeah yeah yeah)

Another month has gone by and lately I’ve been hyper-aware of how fast it’s flying. Markers are infusions and doctors visits. Everything in between has been an effort to make it through another day. It’s no way to live.  My depression is a strong opponent.  Each win for the other side sees me sliding down deeper and deeper.  The fact that I’m so aware of this leaves me feeling defeated. Why aren’t you doing something about it?  Why haven’t you scheduled an appointment with a therapist, the dentist, Bean’s eye doctor???  I feel paralyzed and that makes me feel even more weak.  As you can tell, it’s been a time of introspection and one that is not leaving me feeling satisfied with my thoughts.

I often wonder how other people do it. How do they do their life while battling constant illness? Do I have it tougher than everyone else? A big no to that one. I find myself comparing others that come in to the infusion center.  I infuse 3 days in a row per month; between 6 and 8 hours each day. It’s a long time in a recliner and I learned early on that sweats and comfy jammies were the way to go.  Function over form.  I never thought I would utter those words, it’s something I’ve heard Big C say eons ago when we were getting ready to go out and I was complaining about my heels pinching me.  He mentioned that guys are all about function over form.  What a pain in the ass it must be to be so uncomfortable… hahaha. We have to look good!!  Thank goodness men and women are so different.  Anyway, this last infusion I got there at 8:30 and sat down, wrapped myself in one of my throws, kicked off my slippers, yes slippers, and settled in.  With my hair up in a pony and no make up on, I was suddenly painfully aware of how frumpy I felt.  By 9:00 a few more patients came in.  Each one with a small bag hanging on their IV pole.  Dang it, why is mine so huge…  A young woman sat next to me.  As the nurse covered her with a blanket out of the warmer, I noticed her shoes.  She was wearing a pair of the cutest patent leather Mary Janes I’ve ever seen and they had about a 3 inch heel.  I look at my slippers and felt embarrassed suddenly by my at-home-in-bed-ensemble.  Her clothes were office casual and she was wearing make up, of course. I felt keenly aware of every hair that was out of place on my head. For the rest of the day I was aware of everyone coming and going. Each person seemed to be happy and have it together.  Dressed for work or at least not in their jammies, it was driving me nuts. Was I sicker than all of these people, or was it my frame of mind? Maybe I am sicker-I’m the first one there and the last one to leave. Most that come in are getting Remicade which takes around 2 hours or they’re getting an infusion of iron. My treatment is pretty aggressive. But, I know in my heart of hearts that my thinking is skewed and is keeping me down. I’m not the only one suffering, it’s time to change how I’m going to react to each symptom. I can’t let this keep me down.  It’s time to pull up my bootstraps and do something about this depression.  I have amazing family support and God on my side too.  I didn’t make any New Year’s resolutions but I am going to work on my mindset and keep in touch with those who love me.  Two biggies.

I’ll be back before the month is up  🙂