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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.

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

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.  =)

Where Did the Summer Go?

Where Did the Summer Go?

I have been pretty quiet I know, it’s been a weird and kinda crazy summer.  I finally got my diagnosis (dermatomyositis), got my first treatment; landed in the ER a couple of days later with WORST SIDE EFFECT EVER, then went on to have a series of strange days.

I woke up in the mornings and didn’t have glass feet!  Soon, I was walking without my cane! (this is huge as I’ve been attached to that dang cane for a while now) All of those little cells from 1,000 healthy people were coursing through my veins waving there little cowboy hats and yellin Yeee Haaaawww! and I’m gonna git you sucka! to all of my Good Cells Gone Bad.  And they were winning! I had days where I felt great.  I could load and unload the dishwasher and not be bed-bound for 2 days after. This was actually the case before the IVIG.

So- here’s where I’m the lame-o.  After going in to the ER in the back of an ambulance, I freaked out that I wouldn’t be able to have another treatment. I scheduled an appointment to visit my rheumatologist at the hospital but failed to schedule myself the next round of IVIG.  So, when I meet up with the doc, he tells me no, I can get more treatments-they can pre-medicate to try and prevent the headache of the century and all the vomiting and oh, by the way, when do you go back?  I’m sitting in the chair in his office going, uhhhh.  Gee, I didn’t schedule an appointment… So he goes down the hall and brings one of the infusion nurses into the room and tells her to squeeze me in. Try as she might, it’s a no can do. Their chairs are booked solid. So, I”m having my next treatment on the 21st, and oh man.  I definitely have no stampede of little warrior cells going on now. Probably just one little lone ranger and that’s why I’m having a few good hours here and there.  Other than that, I am in full flare mode again.  Rash, muscles constricted to the point of PAIN and so many weird little things that go with the package.  I had to talk myself down from an anxiety attack this morning.  I felt like I was going to stroke-out with the icepick that was pushing through my skull.  So, yeah.  There’s my illness in a nutshell for the summer.  I left a lot out because it’s BORING and blah blah blah.

OK, now for some good stuff.  We got a new puppy!!! His name is Brutus and he is the most awesome little dude ever.  I say little dude, because if our pets could talk he would totally have a surfer thing going on man, catch a wave dude, awesome, tubular even. And he would talk real s-l-o-w.  Yep, that would be Brut Bruteman.  That’s what I call him because obviously I have problems.  But it suits him.  I call our other dog Pete, Pete Peteman so it was a natural progression.  I guess.  Wanna see some pictures? No? Alrighty then, here we go! (like when someone comes over right after you’ve been on vacation and you make them look at all 350 shots of random buildings and trees in a town they’ve never been and could care less about, fun!!) OK, NOW here we goooo!!!

The Bean decided she wanted to hold the bowl while Brutus ate some.  It was hard to say no…

 

 

Look at those eyes! He is going to be one spoiled doggy, for sure.  It’s hard to deny a face like that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This is the infamous Pete Peteman.  He rocks.  And he keeps the deck held down at all times.

SAM_0079

Alright, I’m off to bed.  Today sucked in terms of pain and icky feeling, I’m hoping tomorrow is a better day.

Until next time

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.

Make Juvenile Myositis A Memory!

Make Juvenile Myositis A Memory!

Pepsi is hosting a contest and is giving away 250K to the winner! I’m supporting Make Juvenile Myositis a Memory by The Cure JM Foundation.  About 5,000 kids in the US are affected by this disease, putting it in the ‘rare disease’ category. But just because that number isn’t astronomical, doesn’t mean that they don’t need the funding. These kids are suffering with a painful, debilitation, potentially life threatening disease.

Here’s a video about Emma’s story with JM-

Will you please vote with me and help these kids have a chance at some research grants?  You can go to the Pepsi site and vote at http://www.refresheverything.com/makejmamemory and also on Facebook at the Pepsi Refresh Voting App. You can vote once each day on each site for this cause, but you get to vote 10 times in each day if you have other causes you support.  Thanks in advance, we really have a chance guys. We are in 12th place right now with over 1,000 applicants and there is 7 days to go! Please vote each day if you can.  Thank you!

Nothin goin on but the rent

Nothin goin on but the rent

I don’t remember what that song was, just that one line. Actually it’s, ain’t nothing going on but the rent. Yup. July is going to be our tightest month. Oh, I hate tight. Tight makes stress levels higher than they would be otherwise. Money truly is the root of all evil, or at least the middle management of crankiness and arguments.

I am still waiting for my insurance to say yeah or nay to approving payment on IVIG treatment. Right now I’m treatmentless. Ha. Still on the prednisone, ugh. Still prednisone fat. It’s not even the belly that bothers me the most, although I do look slightly (ahem) preggers, but the under the chin thwaddle. Is that what it’s called? I’ve got buffalo hump, preg belly, and my chest size is astronimical (never thought I’d see that in this lifetime without surgery) but the one thing that I really can not stand

Even dense facial hair does not hide the 'thwaddle'

EVEN DENSE FACIAL HAIR CANNOT HIDE THE THWADDLE

is that dang fat that hangs out under my chin, extra neck. uck. I got off track there…

I had to stop taking my plaquenil, (hydroxychloroquine) because my eyes are really going. I kept telling my old rheumy that my vision was quickly failing me and he told me it was my age. He said I didn’t need eye exams, oh man. No matter how much you like your doc, always go with your gut! I didn’t. I just nodded my head and now my eyes are really bad. I am referred to an eye institute upstate, but they couldn’t get me in until next month. A few weeks ago I started seeing what I had heard people describe as an aura. The Nugget was playing in the kitchen and I was sitting there watching her and all of the sudden she had this glow around her shoulders. My daughter was talking to me and I guess I got a really scared look on my face because she stopped talking and said “mom! what’s wrong?” I couldn’t stop staring at her because I was looking at it right on and it was still there. You know how sometimes you see things out of the corner of your eye but if you turn your head it disappears? Well it didn’t go away and I just kept staring.  For a minute I thought I was seeing her aura until I started looking around and everything was like that. I had a moment where everything seemed surreal and it brought one one doozy of a panic attack.  It got worse until it was happening more often than not and I started fearing for my sight. I’d heard of plaquenil toxicity in the eyeballs but not any of the particulars. I stopped taking them when everyone looked double vision. I just wish the appointment wasn’t so far away.

Well, I started writing this post 2 days ago.  I keep falling asleep and taking up where I left off.  I think I say this often, but this is the sickest I’ve ever been.

I’ll be back when I can think of something positive and funny.  Positive!

Until next time

I’m back! And feelin wiggy…

I’m back! And feelin wiggy…

I can’t believe we are halfway through the year and I’m still pretty much holding down my bed. There are SO many things that; have happened/are happening/are going to happen, it is overwhelming at times. I can’t post about them specifically as they are family issues, but the stress has all but immobilized me.

I have been putting off going back to the new rheumy to start treatment because there is too much going on and I’m needed here to help. At the same time, the longer I wait and the more I do, the sicker I become. It’s so cyclic. Yesterday I told Big C, just go ahead and call. Try and squeeze it in on any day that we have free and I’ll be there. I just can’t wait any longer. Oh, the guilt of it all is unbearable. I feel guilty now when I’m really sick because so many people need me. I’ve been pushing myself and I’m not new enough to think this will have no consequence. sigh. I need a shower people!!! Yes, that is my goal is to make it into the shower today. Taking it minute by minute.

Recently I posted my first ‘post’ Cushings picture on FB. I don’t look as bad as I think I do.(‘they’ say)  I still got it! LOL No, I just got more of it. 🙂 I’m finally coming to terms with the ‘cosmetic’ side of the disease. I am huge compared to my natural weight, but you know what? C still thinks I’m hot. And really, that’s all that matters. woot! I think he’s nuts but I’ll take it. Seriously though, we have seen more lows than highs in our 11 years together. They are usually not our lows, but lows we have had to deal with nonetheless. And we are still together. We are still desperately in love with each other. We are still our favorite people to be around, we make each other happy. He is an amazing man, and I thank God everyday that I was blessed to find my soulmate. OK, enough sappy shmappy.

But in the same vein as vain, ha ha ooohh k, I have found myself scouring the wig catalog that keeps finding it’s way into my mailbox. I’m convinced C’s ex had it mailed to me to begin with, but now I love’em! There are so many rad wigs out there. I WANT ONE. Is that crazy? Are wigs just for grammas anymore? I mean older grammas. I know I’m a gramma. Just not old yet. I’ll be 43 tomorrow, so I’m young to my daddy who’d 80, but ancient to my daughter who’s 20. whatever. So, I find myself picking them up and looking through and actually pining over 2 of them. Wigs. Pining over wigs. Who am I???? 🙂 I’m losing my hair, that’s who I am. So anyway, I decide to look up the company online, and just Google the name and the first couple are always a couple of ads. One of them says, why buy from company x when you can get quality for the same price? And I decided to click on there. Well, I must have been in need of a laugh, because I could not stop laughing. Belly buster laughs. I’m sure it’s-you had to be there-kind of a thing. But each model, down each row was just HILARIOUS!! And I’m not knocking wigs, or wig models for that matter, per say, just these particular ones. There was 3 faces they had while modeling the wigs. 1. faux sexy tigress 2. scared 3. incredibly embarrased  
I just couldn’t stop laughing. And who did the final go ahead with the website after seeing these shots?? I’m not talking about Paula Young’s site btw, I put a link up to her site. That’s the catalogue I keep receiving.  I really, really want the Renni, in that exact color… OK, I’m done yackin about wigs.

I’m really missing being here. I’ll be here more often. Promise.
until next time,

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