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Category: mental health

What’s AAAAAaaahp!

What’s AAAAAaaahp!

Another year has gone by without me blogging. Not once people! I think if I’m going to keep writing (and I should) this blog has to evolve, because I have. ūüėČ I’m now 10 years in to the spoonie/chronic/wtf lifestyle and life is much different than it was in 2007. Matter of fact everything has evolved in these last 10 years. Seems like just yesterday I bought one of first cell phones that had a camera in it. My best friend made fun of me because it was really weird looking in the hinge where the phone flipped…yes, flipped. ?¬†I’ve been feeling very nostalgic lately….

This year I’ll be turning the big five o. I was telling Big C the other day, what the hell has happened to the time?! It feels like I’ve been ripped off these past 10 years. Everyone says the 40’s are the best years! You’re kids are grown or are close to leaving the nest so you have more freedom, you’ve worked your ass off to get where you are in your career (so hopefully you’re not living paycheck to paycheck like in your 20’s and 30’s even) you might be done with apartment living in and your own home….etc. But I feel like I was robbed. I got sick when I was 39 and my entire 40’s was filled with sickness, pain, anxiety, fear, and suffering. Those things kinda put a damper on recognizing and living in the moment. It’s kinda hard to explain, but I don’t feel that I’ve grown as a person, I feel like I should be turning 40 instead of 50, but it is what it is. ūüėČ

This last year I’ve said goodbye to a few friends after the fact, as they passed quickly and unexpectedly. We all know that we’ve got a greater chance of dying before we hit old age due to disease, but when it happens it’s still such a great shock. I miss them like crazy. It’s brought me to a place where I’m thinking about my own mortality. Would I be happy with my life as I lived it if I died today? No. So I’m making some changes. I’m trying to be more present. Trying to get a little more healthy; changing the things I can control.

Aight. I’ll be back. Baby steps…

 

Put yer eyebrows on foo!

Put yer eyebrows on foo!

Woman Wearing Holter To Monitor Heart ActivitySo today I got my holter monitor attached to me. Mine is either really technologically advanced or this is a really old photo of a woman wearing a holter. In my search for images I noticed that the top two electrodes in ALL the photos were placed up higher on the chest, just like in this photo. Mine are placed on the top parts of my boobs. What the heck?? And the unit itself is the size of a pager. Doesn’t that just date someone when they say ‘pager’? I recently flew next to an 18 year old kid who had never seen one. (hahaha, I schooled him on how life was back in the stone age) Anyway, had I looked these up yesterday¬†I would have asked the tech who stuck them to me why the heck are they on my actual boobs. Now I feel like 2 days from now when I go to get it removed another tech will look and go “oohhhhh. Marcia put this on, right? tsk, tsk. We have to do it ALL OVER AGAIN.” Because that’s the kind of luck I have.

So rewind to 4:30 this morning, I got up, sat in our recliner and cried like a baby. Not because I had to get a 48 hour holter, it’s just I’ve hit my limit in the sick-kid game and when this happens, and it does, I crack and weep like a baby. Trust me, as hard as we try not to cry, letting out a good cry ALWAYS makes you feel better. Purged. Then I threw my ass in the shower and as I was getting ready, I was searching for my eyebrow makeup. Where could it freakin be??? And I thought about it, I only do my eyebrows if I’m going to the doctor. And that’s it. And it hit me, I only put my eye brows on when I have an appointment. Not because I’m trying to look good, but that’s the only time I leave the house anymore!! I used to be wearing a face at all times. I’ve been known to sleep in makeup (ewwww) for fear someone would see me with no makeup on. Is that crazy? Yes. But I’ve never said I wasn’t crazy. Fast forward to 2014 and I never have make up on. Like ever. I guess the line is eyebrows. I refuse to be seen without em. The crazy sick lady with the rockin eyebrows is out and about today people. Make a wide berth…

I was just having a really crappy, feel-sorry-for-myself day and it all changed when we stopped at the hospital to visit my niece. She just had a baby. Oh. My. Gosh. If you ever feel so low that you just can’t see the light at the end of the tunnel, find a baby and hold them. ūüėÄ She was the most beautiful baby, making all the right new-born baby faces to make a heart melt. Now I’m home, under a bunch of blankets (the mid-west big freezzzzzeee), rockin some awesome eyebrows and cuddling with the Bean…

 

rulz

 

 

 

 

A Day Out Amongst the Normals

A Day Out Amongst the Normals

Today was a day for doing. I had a meeting in the early afternoon and just getting ready and getting out there seemed foreign to me. ¬†I wouldn’t say I just realized that I’ve isolated this past year, but doing ‘normal’ things and having them feel so strange is a reminder for me to get out there. I’ve bubbled myself in this house and it feels really good to get out and do anything that’s not illness related.

So I meet my brother in the early afternoon for this appointment with a lawyer. ¬†We’re talking and after we conclude our business she asks “So, which one of you is older?” Holy shit. I just looked across the table at J and said “Uh, he is.” My brother is almost 8 years older than me. Has hunkering down in my house for a year aged me like, a decade?? I already have issues with being 45. I don’t know when it happened. I was 35 and then bam! 45. Time is just flying by. Anyway, we head back towards home to let the dogs out and we have to be at my mom’s house at 6 for dinner. I made her a journal/planner thingy and I wanted to give it to her tonight, but our printer is out of ink. ¬†So I put all the files on a flash drive to print it out at a store. ¬†C says lets stop at the drug store down the street, they have a kiosk there where we can print them out. ¬†We get into the store and I swear, I’m feeling like I’ve never been inside a drug store before. ¬†I started to get that pre-panic attack feeling in my chest. We head into the camera department and find the kiosk and I couldn’t find the slot for the flash drive. I’m looking all over the machine and instead of asking someone for help I’m determined to find the dang slot. I had to ask. Turns out it’s hanging off the machine on the end of a cord. By then the Bean is all over the place. She’s tired from being in the car half the day and her blood sugars are low. She’s trying to climb on the unreasonably tall chair they have in front of the kiosk and simultaneously asking when we’re going to be at Nana’s house for the millionth time. I spend like 5 minutes going through the two thousand files (literally)¬†that is on his flash drive and I’m not seeing the files. I realize that I forgot to save them as jpegs. They’re in psd format and the stupid machine doesn’t recognize them. By now it’s 4:30 and we jam back home so I can process them. Photoshop crashes about 5 times and what would only take a few minutes took a half hour. I’m a total wreck trying to get these files changed while C and Bean are waiting in the car. :/ By this time I don’t want to go back to the drug store. So we stop at a copy place on the way. The guy that works there tells us the machines only recognize pdf’s and power points and I’m thinking ‘whaaaa?’ He says he can put the flash drive in his computer behind the desk and print them out for me. It’s his cashier computer and he turns the screen and starts going through what I recognize as Window’s tutorials. I’m totally having a panic attack now. Bean is floppy, like flinging herself around the store. ¬†When C walks over to peel her off of a woman that’s working there Bean says ‘Grampa’ and the woman stops what she’s doing looks at C and says “NO WAY!!! You’re WAY to young to be a grampa!” After not being recognized as younger than 53 earlier, hearing her say that to C made me want to slap her. ¬†Or slap him for looking so dang young all the time. The clerk behind the counter is rambling something at me about his computer freezing and all I can hear is ‘wah wah wah’ and I feel that sweat drip down my neck and I look at C and he’s looking back at me like ‘I can’t help it!’ and I started giggling. Yes, I did.¬†Inappropriate¬†laughter-I’m always good for that. Bean looks at me and starts laughing because I am and then it’s infectious. I just want the damn print outs and I want out of the store and Bean is belly laughing. It took forever and 27 bucks and half of the papers with the tops cut off of the pictures later and we made it out of the store.

I HAVE to get out more regularly. I felt weird today, like people could tell that I felt uncomfortable. Physically though, I think I’m doing pretty good. I guess I’ll find out tomorrow morning if I overdid it today. Totally off topic but far more interesting-today is David Bowie’s birthday. ¬†And I look way younger than him! If you’ve made it this far through my really boring and panic-filled day you deserve some Bowie. Click here for¬†awesomeness.

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!
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. ¬†ūüôā ¬†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 ¬†ūüôā

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.

Depressed and optimistic, is that possible?

Depressed and optimistic, is that possible?

 

I have dropped off the radar again. ¬†Not intentionally; ¬†the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me. ¬†I haven’t talked to my best friend in at least a month. ¬†Again, not intentionally. ¬†I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore. ¬†I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop. ¬†I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit. ¬†I actually missed my last one. ¬†I couldn’t get out of bed so C went and picked up my prescriptions. ¬†This is no way to live, I feel powerless to change it.

Between non-stop flaring and being a momma, I have no time for anything anymore. ¬†Facebook, my Christian groups, Flickr, television, nada. ¬†For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill. ¬†It’s my ticket out into civilization, lol.

Read More Read More

Time off for bad body behavior…

Time off for bad body behavior…

DSCN2786

Hey all, I’m baaack!! ¬†What a long strange trip it’s been…These last few months have quite possible been the worst time in my life. I developed full-blown Cushings Syndrome complete with 90 extra pounds-all in the stomach, neck and lovely fatty back hump. ¬†I won my disability appeal and then got screwed out of my arrears…I received a check for SIXTY-FIVE DOLLARS for 3 years of back pay (that will be a post all on its own) I also developed ‘chronic edema’ which I didn’t even realize was possible. ¬†I thought if you held water, you could take medicine to pee it all out. ¬†Guess what? ¬†I’m keepin my water, it hurts, and it’s baffling to my docs. ¬†I had a transvaginal ultrasound and a CT scan to look at my bladder, uterus, kidneys and adrenal glands and everything looks good except I have fibroids in my uterus now. ¬†On a side note: my doc admitted that when he sees my name on the schedule he gets nervous. ¬†He says I’m an anomaly. ¬†I’ll probably look that word up some day. ¬†My physical issues seem to just keep piling up and getting more baffling to the docs, and we have had many emotional jolts along the way that pretty much have almost shut me down completely. ¬†My father’s Alzheimer’s has gotten worse at an alarming rate, it’s killing me to see him suffer. ¬†And, Ms. Bean’s language barrier is frustrating her to the point of alot of screaming and cawing(sp). ¬†Her baby sister, the Nug, is 15 months old and she is rapidly learning words and phrases. ¬†The Bean loves the Nugget like crazy but I can see the jealousy starting to creep in. ¬†I wish we would have started sign language early, I think I would like for us to try now.

OK, that was my machine-gun synopsis of some of the crazy stuff. ¬†It is important to me to keep this blog going, but I have to keep me going first. ¬†There was this day, this really really bad day. ¬†I wanted to open my computer and write. ¬†Just write until I had nothing left and I remembered I couldn’t. ¬†I had found out through another blogger, that a health site that I belonged to had the rights to my blog’s writings, photos, the whole thing. ¬†By me setting up my blog feed on their site I was giving them all rights. ¬†Of course I didn’t know this nor did I see it in their TOU when I signed up. ¬†But who really reads every word of those?? Me from now on!! I was livid. ¬†I got on site to cancel my account, and wouldn’t you know it? ¬†There was no link to click to cancel. ¬†I had to write to support. ¬†I received an email response from the doc who ran the site instead of support, which I thought was weird, but not when you know that you are being scammed into releasing all of your copyright rights to a website. I waited a couple of weeks before posting this, we’ll see if it turns up anywhere else……

OK. ¬†If you are still here, congrats you sat through a dreary post. ¬†Apologies. ¬†It’ll get better. ¬†ūüôā ¬†It’s good to be back.

Until next time

2miichelle

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I’ll have a zoloft sandwich, please

I’ll have a zoloft sandwich, please

Day 275/365: The Stand
Image by ~jjjohn~ via Flickr

It’s safe to say I can’t stand depression.¬† I mean who does?¬† It sucks, sucks, sucks.¬† I know that it is a chemical tweak in my head, I know that things are better than they seem, I know that I won’t feel like this forever, but even with all that knowledge-it doesn’t hurt any less.

I have people who depend on me.¬† How extremely selfish of me to focus so much on me.¬† I need to pull up my bootstraps, as they say.¬† Or something like that…

How do people do it, I want to know.¬† It’s been months, and I do mean months of joints pain, muscles that won’t relax, muscle pain/burning and weakness, rashes all over my body, feeling like there is sludge or lead in my veins, so heavy, heavy how am I going to make it through the day again?¬† I ask God to help me.¬† Please help me.¬† And He does, sometimes.¬† Other times I’m guessing it’s something I need to figure out on my own.

Sometimes I feel like screaming at everyone around me (that would be family, who always has my back) YOU TRY AND DO THIS FOR 3 F*@#%ING YEARS WITH VERY LITTLE ‘DOWN TIME’ AND SEE HOW ‘NORMAL’ OR ‘YOURSELF’ YOU SEEM.¬† IT’S SO HARD TO BE IN PAIN/FATIGUE/SICK FEELING LIKE POISON OR SLUDGE RUNNING THROUGH YOUR VEINS/COMA SLEEPING/BURNING AND SO ON AND SO ON…¬† I know it’s hard on them too though.¬† It must suck to live with someone who is constantly in some form of pain or sickness.¬† It has to be tiring, and not very fun giving giving giving.¬† I hear this a lot “oh wait, why am I complaining to you when look at all you have to go through”.¬† No.¬† I WANT people to be able to vent to me.¬† I want my husband to tell me all about his shitty day and not feel guilty about doing it.¬† But if you see the bold print above, I must be throwing mixed messages out with my body language and mood.¬† I suck.¬† I haven’t ever said those words, it’s just pops up in my selfish little mind sometimes.¬† Wow, typing this out is cheaper than therapy!¬† Good thing, because the medical bills have drained us, we are broke.

The Big C tells me that it won’t always be this way and I wish I could believe him.¬† I tell him “I know” and give him a hug because he needs to hold on to that and believe it so he can keep on going.¬† This disease has really hurt the man that I love. He can’t stand to see me when I’m writhing in pain and there’s nothing he can do to help me.¬† At least, that’s what he thinks.¬† Just being there and holding my hand is helping me, I tell him that.¬† But he wants to ‘fix it’.¬† It drives him crazy.¬† If the shoe were on the other foot, I would feel the same way.¬† Helpless.¬† It tears him up and it hurts to see him that way.¬† Then I feel guilty.¬† When I think about it, this illness affects us in so many different ways, and offshoots of ways, a lot more complex than I thought.

My body has done some pretty awful and unbelievably painful things to me and each time I would think, it couldn’t get any worse, I have never felt such awful pain, suicide pain is how I heard someone describe it and that hits the nail right on the head. When your body is in pain in multiple places for extended periods of time, the kind of pain that’s a 10 on the pain scale, you’re in the hospital and they are slamming your IV with morphine or fentanyl or demerol because your blood pressure is through the roof due to pain, and even though you’re floating with so much narcotics running through your veins, there it is.¬† You can still feel it.¬† It’s like it’s a mocking you-I’m here to stay.¬† That’s suicide pain.¬† How do you stay positive???¬† How do you get up in the morning and hide the pain face from your kids??¬† How do you stay happy???¬† I try so hard, but I’m in a place now where I’m failing.¬† I’ve been there in that moment so many times, I NEVER would have guessed that my life would be like this. ¬† I just really want/need one of those days where I wake up and feel like the old Chelle.¬† It’s amazing how much that gives to me just having a day, or even a few hours of feeling normal, it keeps me going for weeks.¬† Then I think, I WILL go into remission.¬† And, sometimes I just need to be reminded what normal feels like so that I can start being positive and work towards that.

The Bean is eating her cereal, late, and she is smiling and singing Twinkle Twinkle, in her own way which is totally amazing.  Everything falls back into place now.  She is my reason.  For everything.  Tomorrow will be a better day.

Special thanks to JJohn @ Flickr for the most beautiful flowers

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