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My Big Fat Greek Mom Guilt

My Big Fat Greek Mom Guilt

No, I’m totally not Greek at all. I was trying to be hip. Oh wait, hip’s not hip. Oh what? That movie was like big, like, a decade ago?? Haha, you know as I was writing that I thought, hey this is the funniest stuff! I do try though, don’t I?

Today is our son’s 23rd birthday. He lives a few hours above us, and due to his work schedule and his fiancee’s work/school schedule, plus the fact that they probably don’t wanna hang with the moms and pops when they do finally get some downtime, we don’t get to see them as often as we’d like. He decided he wanted to come down and go camping with his dad. 🙂 Perfect! But-I told everyone I couldn’t go, my body has been weird to me lately and I didn’t think I could make it in the heat and in a tent. I know. I have the most understanding of kids. They really do rock. So that’s not the guilt, here’s the guilt-I kept Bean here with me. She’s not awake yet and Big C and I could come up with nothing that would magically make her feel better about being home with me. She got to stay up late last night and see everyone, so she knows that they’re here. She gets SO excited when her uncle K’s fiancee comes. I say she likes A more that she likes candy and I’m right.

She’s timid when it comes to the outdoors, she has a hard time walking trails and fear leads to meltdowns of epic proportions. I really wanted Big C to have some quality camp time with K and the rest of the gang. If we had her go, Big C would be spending all of his time trying to soothe her so I made the executive decision to keep her with me. Here’s the thing. She has no idea that when she wakes up everyone will not be here and what the heck am I going to tell her. I kept asking C last night, help me think of a good way to tell her. Or just not a really bad way to tell her. I still don’t know. I’m thinking I’m going to tell her that they went camping for one night, and that I really wanted her to come with me to visit Nanna. And just hope she doesn’t hate me forever. (<—- melodramatic haha)

That’s all I’ve got for now. I’m going to leave you with the cutest pic of K when he was the cutest. :0)

 

AAAHHHHH!!! He was so dang cute. Now he’s an adult and he’s still dang cute but I don’t want to pinch his cheeks anymore. They’re all beardy.
Until next time,
Chronicles of a New Sick Chick

Chronicles of a New Sick Chick

 

 

I’ve been going through an old journal/blog of mine that I had set to private. It was basically a place where I vented to myself (lol) and also as a symptom tracker. It’s weird to read through it, I forgot just how truly awful things were. I’m posting these as I think they might help someone who’s newly ill/diagnosed/trying to get a diagnosis. I really was frustrated, sick, in pain, and flat out tired. I think it’s normal for someone who doesn’t really know what’s going on to have so many negative emotions. It takes time and repetition with those bad symptoms to not panic when you get them, to not be so angry, etc. I don’t buy that expression ‘time heals all wounds’ I think that’s bullshit. Time allows us to have experience with issues so they’re not so big, scary, awful. They become a little less. They still suck. I hope this helps someone out there. You are so not alone.

(I added these in the upper left hand corner of the blog, right next to About Me.)

 

Looking Back and Moving On

Looking Back and Moving On

 

We’re in the process of packing to move across the country. It’s a job that seems undoable to me at the moment. Whatever’s going on in my body makes me really, really unreliable. When I’m standing upright I have an overwhelming need to lay down. Go horizontal no matter if I’m in public or not. Haha! I’ve never laid my body down on the ground while out in public but the awful rush of the feeling of gravity pulling me into the ground is almost unbearable. Have you ever been on a ride, like a roller coaster where the ride is going so fast that you feel the g-force pushing you backwards? That’s what it feels like except it’s pulling me into the ground. sigh. I’m so completely, completely over my body doing all of the weird stuff it does.

One of my specialists tells me it’s CFS/ME the other thinks the DM is becoming active again, albeit very slowly. I guess we’ll see in time if that’s what it is. For right now though, I can get up from a chair without using my hands. That sounds so simple, but it’s the major test with my rheum to check my muscle strength. I can do it!!! I can climb stairs, I can get out of bed, I can walk down stairs which was always harder than climbing them. My muscles, other than being atrophied, are doing what they’re supposed to be doing. I should be celebrating my remission!! But there’s something else going on. How unfair is that?? To be in remission and be sick as hell is supremely unfair. I just keep telling myself ‘your muscles are good. your muscles are good’…it’s my mantra and it’s all about perspective.

                                         Image courtesy of Burly Man, another Myosotis fighter.
Don’t you? 😀 Hate it, hate it, hate it!! But it is what it is. I try to enjoy the good times with every fiber of my being. This disease and the whole process has changed me for sure but I’ve received some really good things from it too. I am aware of time and just how valuable it is. It’s made me appreciate my family and friends more. I tell the people I love that I love them all the time. I probably sound like a broken record but I mean it. Being aware of your own mortality is a little scary but it really does make you appreciate. Everything. I’m very lucky to be here on this earth, complaining about my health. haha!

Whatever is going on in my body will not keep me down. We ARE going to be fully packed and ready to go by the end of the month. I’ve found a new mantra.

Until next time,

When Depression Stops You In Your Tracks

When Depression Stops You In Your Tracks

Ok people, my body is forcing me to be pro-active, and to be honest with you, I haven’t been pro-active at all this past year. I was so sick last night that when I  woke up this morning I was surprised that I woke up. I actually had a moment of wow-I’m here.  My body has done some pretty crazy stuff to me and I don’t ever remember being surprised that I made it through the night.  When that’s your first thought in the morning it’s time to get off your ass and kick your depression and anxiety to the side and FIND A NEW DOCTOR.  I’m struggling with my depression and I’m at a place where I feel like ‘I just can’t’ and I’m intelligent enough to know that my brain is making me feel this way.

I’ll tell you a little story about the reason I haven’t gotten a new primary care doc in the last 5 months.
[side note: my rheumatologist and neurologist are amazing.]

My father fell and broke his hip last November. He was 82. Everyone at the hospital told us that all of his breathing issues were due to that trauma of the break. Before he fell, he didn’t have any breathing problems or any other physical problems, just the Alzheimer’s. We had to wait a couple of days because he wasn’t stable enough to survive the surgery. His DNR stated ‘use all measures to sustain life’ so of course we opted to get the hip surgery done. One doc told us we could not have it done and I thought that was the craziest thing I’d ever heard. He suffered those 2 days with excruciating pain all the while looking into my eyes and mouthing words ‘help me’ under the Bi-Pap in sheer terror. My father had late stage Alzheimers. He didn’t know who I was. He had the surgery and the surgeons were blown away by how well it had gone. I told them my father is a fighter, and tough as hell. Of course it went really well. I had my proud daughter thinking cap on. Things went down hill again and he was moved to ICU and vented. We had many doctors, nurses, specialists tell us that he wasn’t going to make it and that the vent would probably not be able to come out. And it did. He made it off the vent. He made it up to Intermediary Care ward and was on a Bi-PAP. With the Bi-PAP on he still wasn’t getting good oxygen levels. He was suffering.
After 2 and a half weeks we had to decide to take it off. By now, he wasn’t opening his eyes anymore. I sat next to him and prayed the rosary for him, told him not to be afraid as he is going home to be with his family, and talked about our times together. The nurses were surprised that he was still with us on this earth and his vitals even looked good. I was hurting and told the nurse I was going to lay on the window seat, facing him and she said she’d monitor the vitals behind the desk and let me know when he was close. In all of my 45 years I have never felt so guilty for having to lay down my body during my dad’s time of death. I watched his face. He looked so peaceful and I could hear his breathing. I closed my eyes for a second and I felt like a pop in the air, I felt it on my chest. When I opened my eyes I saw this dark smoke ? waft it’s way out of my dad’s nose and it pooled in front of his face. I screamed out to my partner What the hell is that?? and the nurse ran in the room and screamed ‘you better say goodbye to your father now!!!’ I jumped off the seat and ran to him screaming I love you dad I love you dad! And he was gone. The nurse said his vitals were ok then they just dropped like incredibly fast. Someone told me he waited for me to close my eyes so I wouldn’t have to see him die.

At about the time my dad was put back on the CPAP and we were told by 4 different docs that he wasn’t going to live, and that basically we were keeping him breathing for us. That we needed to decide because that breather was keeping him alive and maybe we were being selfish. In different wording, not that harshly. It was about then that my doctor refused to fill my zoloft. Refused. I had been on it for 10 years, I have depression and have since I can remember. I was at the hospital, praying and sleeping there and couldn’t believe she wouldn’t refill it. We came home to shower and I called and her assistant said she hadn’t refilled it in a year. I was speechless, I was holding the bottle in my hand and it very clearly had her name on it, along with the last years worth of bottles as well. So, we called the pharmacy. It was a pharmacy mistake. When they got a denial to fill A YEAR BEFORE from her they sent it to my old doc without telling me and he filled it. And continued to do so for a year!! The pharmacist called my doc to explain it and I did as well and she stood firm and said. No. I will not refill your zoloft. Not even a months worth so I could find a doc who would actually treat a woman with depression with the meds that keep her head above water. I had one one day and the next nothing. I spent the last week of my dad’s life going crazy in my head with grief, and my brain chemistry was out of whack after not having zoloft for a decade.

It’s safe to say that I am clinically depressed and receiving no medication for it. It’s also safe to say that I have this weird fear? to get a new doc. I don’t know what it is. I haven’t been able to go and get a new primary care doc. There was something that happened to me the year before that just shut me down completely, when it comes to doctors. It took sheer determination to find this one, the one that wouldn’t refill my zoloft. And now I feel defeated. And I can’t be. Something is going on in my stomach that will probably require surgery to fix, so says the ER doc, and I knew way back in the 90’s that one day I might need the surgery.

I’m struggling today. I’m in lots of pain in my stomach and really have to get my head together and start looking for a new primary care. I’m promising myself I will this week.

 

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,

 

 

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

 

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!                                                                                                  

Needing Some Extra Energy. Please…

Needing Some Extra Energy. Please…

It’s been a crazy past few weeks around here. A week ago today I was in the ER with a heart rate in the 150’s and palpitations. I had been up all night the night before with the most horrible all-over-body squeezing sensation. It felt like I was being constricted by a boa snake.  I had recently started a new medicine that didn’t react well with one that I’ve been on for the past few years. I was told the reaction is rare and there ya go. If it’s rare more than likely I will experience it. I’m tired of being rare, thank you very much body! I stopped the medicine and those awful symptoms are gone.

I’m just hanging out today playing in photoshop and watching the Bean play with her toy kitchen. 🙂 She’s on Spring Break which sounded really exciting to her. When she asked me what it was and I told her it meant no school for a week and a half she said “oh man!!” LOL She does love school. If we can get a day of sunshine coinciding withe some energy, we will go visit the zoo. She’s never been before and it’s been years since I have.

Here’s to sunshiny days!

 

A Guilt Free Day of Art

A Guilt Free Day of Art

I spent the day doing absolutely nothing but scrapbooking. It was SO nice. I turned off the guilt filter. The one that pours into my head every thing that I should be doing or should think about doing. Sometimes I am my own worst enemy. So when I get rid of those negative feelings it’s like ahhhh. I can just sit here and make art and memories and enjoy learning some new things in photoshop. Awesome. 

A couple of years ago I joined a digital scrapbooking site and I would get on and do a few pages and then I would shut the computer and not go back for months. It was always in the bad months when pain and immobility were getting to me mentally. I couldn’t scrap, or blog for that matter. I guess this means I’m doing a bit better, huh? That’s always a good thing. I’m going to share with you a quote page I did. It’s not fancy or anything. I like the quote and I kept the page very minimal. 

 

 

Paper by Natali Design at Scrapbookgraphics dot com
The fairy is a free brush I found at Obsidian Dawn
I’m wiped out now. It’s 2 am here and I think I’ve scrapped all the my hands can handle. 🙂 I hope you all had a good Monday. If you do any digital scrapbooking or use photoshop, drop me a comment. What’s your favorite site or tool to use? I’m only 1/4 geek, the rest is Irish. hahah
Until next time