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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

 

 

 

 

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.

Mish-Mash Friday with a little bit a dis and a little bit a dat

Mish-Mash Friday with a little bit a dis and a little bit a dat

I get the weirdest spam on this blog. There’s tons that are just gobbledy-gook like a cat ran down the keyboard and here in there in the mix are some smut words. Other times there is a paragraph of nonsense. Makes me laugh as I go through them. Here’s one

I’ve been searching for some time for one high-quality content articles with regards to this unique topic . Doing research in Yahoo I lastly encountered this site. After reading this post So i’m glad to pronounce that I get a wonderful impression I came across whatever I was looking for. For certain i will ensure to don’t forget this website and visit consistently.

It reminds me of grade school when the teachers gave¬†you your first ‘real’ writing assignment and it has to be x amount of words. Lookout thesaurus! I’m gonna throw in as many descriptive words as I can get away with for describing the waters George Washington was crossing. ¬†A for effort to the spammer above, although it was probably just computer generated.

Pretty sky shot gone 'wrong' after post-editing..bwaha ha ha ha!
The Heavens

Life is still the same as it’s been all Summer, except now it’s Fall. I’ve been battling depression and trying to fake it ’til I make it. ¬†It a motto Big C and I stand by and I try really hard. But lately, I’ve been mopey. ¬†I had my infusions last week. ¬†My ‘head pain’ came back and my rheumy threatened to pull the plug. I whipped on my shades and then proceeded to cry like a baby in front of all the other infusees. ¬†He said it was too dangerous, chance of me having a stroke. Huh? I sure didn’t read that anywhere. So C and I pretty much begged. The infusion nurses, who btw are saints, suggested I take an oral toradol added to my pre-meds, and then IV toradol at the end of the day. ¬†This being what stopped my head from exploding in the ER the month before. He agreed and put it the order and the next morning I showed up just praying, praying for no pressure that ultimately turns into the head pain. I took my pre-meds, tylenol, benadryl, and toradol along with my regular pain meds and sat back in the chair and prayed. ¬†The infusion nurse chatted as she hooked up my IV and I prayed silently some more. Well, before they hang the bag of immunoglobulins, they hang a bag of solu-medrol as part of my pre-med package. It’s like liquid prednisone (yuck) I feel fatter just thinking about it. Anyway, as soon as the drip started my head started to swell with incredible pressure. It’s the solu-medrol not the IVIG!! I was so happy!! I can continue with the infusions! And that’s when I found out my rheumy decreased my dose this time as a precaution. He told me it’s the least amount he could give me without stepping in to the non-therapeutic range. ¬†Well-it’s been over a week, and I’m not feeling better like I did last time. ¬†I was SO looking forward to that well-floating-in-a-cloud-back-to-healthy-feeling. ¬†It’s not coming and I’ve got the pity party blues.

I’ve got to get into the shower, pull up my bootstraps and fake it ’til I make it. Woot! ¬†Or, I could stay in bed and scrap. That sounds good too. I’ve got tons of new graphics just waiting to be pieced together around my beautiful family. ¬†I’m thinking I’m going to choose the latter. As a matter of face, I already chose =)

Until next time

Picture above: I got that shot on the way to the hospital’s infusion center in a moving car. It came out pretty good considering, but I tossed it into Picnik and did some heavy duty editing with all the goodies they have. ¬†=)

Infusion, Confusion, Intermission…

Infusion, Confusion, Intermission…

I am in the process of getting a new treatment this week. It’s called IVIg and it’s exciting and it sucks. When I say it sucks, it’s because I’m the lucky ‘50%’ that the nurse said would get a killer headache. It’s the worst one I’ve ever had. ¬† I am banking so much on this to give me some good days that I’m so afraid it won’t work. I’ve had two straight days of infusion, sitting in the chair for 7 hours praying. Today was the third and last day for this month and in true Michelle form, we overslept. Both of us. We got ready as fast as we could and jumped in the car. ¬†Big C called the infusion nurse who told us it was too late (we would have been an hour late) she said she was alone today and if I came I would throw off the afternoon schedule. Sooo, I go back on Friday. Well, my body decided to go into full flare, and something else I’ve never felt before. The new ‘good’ cells must be in full attack mode of my bad cells. ¬†I am red, head to toe, have the worst headache ever and hurt EVERYWHERE.

This is not a good post, not my best writing for sure. ¬†I’m having a hard time seeing right now. ¬†I just wanted to check in, let everyone know I’m still alive. ¬†All my Facebook friends, I’m alive! I just don’t have the strength to even get on the computer. ¬†It’s hurting my eyes. I’m missing talking to everyone!! ¬†Oh and Miss M-you are so wonderful too!! I saw your comment on the picture from my phone. Love you! ¬†Miss E-I got your postcard, thank you! I love you!! You know I’ve been really sick and out of touch when I’m using my blog post like an email….

I’m posting a video I found about a woman’s experience with her IVIG treatment while she’s getting her infusion. ¬†It is not me in the video =) ¬†I’ll be back after my ‘intermission’. I’m praying that tomorrow I feel human.

Taped From an IVIG Infusion Treatment from Stephanie Cion on Vimeo.

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.

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Late night randomness

Late night randomness

Fractured, LITAL©2010
Fractured, LITAL©2010

Infinity. ¬†I know that this is totally random, but when I got on tonight to post, I noticed this icon that I have probably seen a million times and never bothered to see what it was. ¬†So I clicked it, and it’s a dialog box for custom characters. ¬†The first thing I see is the infinity sign because my cursor was hovering over it when I opened it. Second thing is there are symbols for the suits of cards-diamonds, hearts, and clubs. No spade. Where is the spade? ¬†It is by far the coolest suit when it comes to cards. ¬†Huh. ¬†(note to self, edit the hell out of this, you are sleep deprived.)

Infinity kind of ties in with what has been on my mind lately. ¬†I don’t feel like me anymore. ¬†The old me, I guess. ¬†That’s my problem. ¬†It’s been almost 4 years since I became sick and I am realizing I am just not me anymore. ¬†Or am I? ¬†Has being chronically ill, or finally accepting that I will always be sick changed me? ¬†For sure I am different when it comes to the things that I can and can’t do. ¬†It’s like night and day. ¬†If I knew that I would become sick like this, oh man. ¬†I would have appreciated life so much more. ¬†All the little things, like sitting on the floor with the Bean. Being able to get out of bed and hop in the shower. ¬†Walking, anywhere. ¬†Riding in the car for more than a half an hour. ¬†Driving. ¬†Movement, I never ever thought about illness, I never thought I would have to think so much about movement. ¬†At this point in time, I am unable to do the simplest things, it is so frustrating. I’m angry. ¬†Did I say coming to terms somewhere up above? ¬†Let’s say there’s different levels of coming to terms with it. ¬†Right now I’m at the basement level; I’m aiming for the sky, penthouse please.

Pity party is over now, grab your coat and get the heck outta here! ¬†I’ll clean up the mess, tomorrow is ALWAYS a brand new day.

2michelle

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Tenacious Tuesday

Tenacious Tuesday

I used to work in a drug and alcohol inpatient rehab facility. ¬†That’s a mouthful. ¬†Each night I would come in and meet with the swing shift nurses and get caught up on who just came in, what their drug of choice is (that would determine their detox protocol) and who was the troublemaker of the day, there always was at least one, and so on. ¬†These people who came in to detox, they were in for probably one of the hardest things that they’d ever had to do, emotionally and physically.

After report I would go and check everyone’s vitals, see if they qualified for any medications. ¬†Some of the patients wanted to talk, others wanted me to just get the hell out of their rooms as fast as possible. ¬†None of the patients wanted anyone to be a part of their nightmare, as they called the withdrawal process, to see them at their worst. ¬†Most were embarrassed and wanted to make sure that I understood that they weren’t bad people. ¬†I loved my job, I felt that I had found my calling, but I was so soft. ¬†I couldn’t get that hard-ass attitude that was needed when they would try to trick you into letting them break the rules. ¬†Drug addicts are the best manipulators in the world. ¬†I know, I was with one for 10 years. ¬†All of this is coming back to me today. ¬†Today I am in withdrawal. ¬†But I am home-not in a facility, I’m not an addict but a chronic pain patient, and no healthcare team is seeing me at my worst- my family is. ¬†I am dosing down off of a narcotic pain medicine that does not lower my pain levels. ¬†Withdrawal is part of the package, you can’t tell your body to mellow out, I wish you could. ¬†Am I an addict because I take pain medications? ¬†I say no. ¬†I am trying to survive, and have a quality of life that is livable.

I have been through so many different ‘things’, the only word I can come up with, with this disease. ¬†It has ripped me apart. ¬†I have found strength in myself that I have never known. ¬†I have come face-to-face with prejudice. ¬† Hatred almost. ¬†For taking narcotic pain meds. ¬†Some people think that I shouldn’t. ¬†I’m not a cancer patient! To that I say, no I’m not. ¬†A cancer patient has foreign cells attacking their body, I have my own cells attacking my body. ¬†Why would the pain be different? ¬†Because everyone knows what cancer is. and autoimmunity is not that well known. A cancer patient has a chance for therapy to eradicate the foreign cells with chemotherapy and radiation. ¬†It doesn’t always work, but there is a chance for recovery. ¬†I don’t have that chance. ¬†They can’t kill my own cells to stop them, they are mine- not foreign. ¬†There is no cure for me. ¬†I am in the process of finding the right mix of medications to stop or slow down my system from attacking me. ¬†Some days I wish I had cancer.

Wow, what a rant!! ¬†Like I said, I’m in withdrawal. ¬†Self-induced to get off of one medication so I can try another that hopefully will bring my pain level down enough so I can live my life without constant pain. ¬†An article showed up in my email and it is about chronic pain patients with depression. ¬†After reading it I was so pissed, until I remembered-people just don’t get it. ¬†If you are CHRONIC PAIN patient, your pain is there ALL THE TIME. ¬†Acute pain, probably get a scrip for pain meds and then none because the pain goes away. ¬†Chronic pain=always. sigh. ¬†The first paragraph of the article states that ‘they are more likely to stay on them long-term’, duh!! If you find something that works, you stay on it!! ¬†Your chronic pain isn’t going anywhere. ¬†Also, ‘they are likely to become dependent on them’. another duh. ¬†Where are the statistics in this article that states that people with legitimate chronic pain are less likely to abuse narcotic pain meds than ‘regular’ people. ¬†I’m going to have to find that now. ¬†I am a chronic pain patient. ¬†I am on one of the biggies for narcotic pain medication. ¬†It’s not working for me. ¬†I am dosing down off of it so I can stop taking it. ¬†I will try something else. ¬†I’m not stuffing more and more into me. ¬†I’m doing the logical thing. ¬†I think most chronic pain patients would do the same. ¬†All we want is to be pain-free, or at least a tolerable pain so that we can go about living our lives as we used to be able to! ¬†Story below that got me on this rant. ¬†Until next time

Michelle

Depressed pain patients more likely to get opioids: study

Reuters Health UPDATED 2009-11-18According to a new study, chronic pain patients who suffer from depression are more likely to be prescribed narcotic painkillers such as morphine and codeine. Researchers also found that depressed patients were more often given higher doses of these opioid medications, and they were more likely to remain on them long-term. Researchers say their finding suggest that more study is needed on narcotic prescribing practices for depressed patients, especially given that they are more likely to become dependent on these drugs.  Read full story >

via Depressed pain patients more likely to get opioids: study.

Easter naps, fat legs, and Bowie

Easter naps, fat legs, and Bowie

.: Easter Eggies :.
Image by Warm ‘n Fuzzy via Flickr

I spent this Easter in bed, dozing off and on with the laptop sliding off of my legs every now and then.¬† Not my ideal Easter.¬† The Big C cooked a delicious ham with all the fixins- and I slept.¬† The kids had an egg hunt, and I slept through it.¬† A few of my grandkids got overly boisterous and got time out, I slept through it… lol.

I’m so tired of being sick and tired.¬† And yes, I know that expression is tired, but it’s so freakin true. I haven’t been around much because I’m afraid to just blog about negative stuff, or sound like I’m whining.¬† Each day I think about a post and I end up not doing it either because I am too sick, or too depressed.¬† I refuse to let that get the best of me!!¬† So every once in a while there will be a post with a lot of whining and bitching…no big deal, right?

Here I go…

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