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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.

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

Depression=self-imposed isolation

Depression=self-imposed isolation

It’s been a while since I have written anything at all. Other than this blog I have waaaay too many social networking sites and photo sites and mom sites and anything-you-can-think-of sites. They all have pretty much just been sitting there in my browser. I don’t read much anymore, I don’t watch tv, I’m not even sleeping right anymore. I either have insomnia or I can’t wake up. I know that this is depression. I just don’t know how to snap out of it.

I have been so down that I didn’t want to live before. I don’t feel that way now, I just don’t seem to care and that’s not like ‘me’. The real me. The real Michelle is happy, goofy, always laughing or making someone else laugh at her, chatty, phone-talkin, computer typin, dancing, going out places, shopping, ms. make-up face, etc. I am the anti-me. The bizarro Michelle (Seinfeld? ha).

I want my old life back and I can’t seem to let go of that lately. I will be in the car with The Big C going anywhere and I’ll see women walking and I wonder-where are they going? And they are walking there? I wanna do that! Do they still work? Are they happy? I bet they are not sick and in pain. This is not healthy to be wondering about stranger’s lives and feeling jealous of their health. I don’t feel jealous of the health of anyone I know, just strangers and the people that I don’t like, ha! I’m like, ‘it’s not fair that so-and-so; the most despicable, narcissistic, worst parent in the world can just jump up in the morning and go to work and go on vacations to other countries and go camping and yadda yadda yadda. ( I can’t stand this woman for good reason, she is awful to her children) And here I am, a woman with a great family who recently graduated from college after going back to school as an adult. I finally got to work in the field that I always wanted, to help and care for people acheter viagra. I am still really pissed that I was robbed of that, I was only in the field for a year before it hit me. I had a healthy social life. We as a family would go camping, hiking etc. I loved to go shopping, gambling, dancing, traveling, driving, living life!!!! I want that woman back so bad it hurts. And it’s not going to happen. There is no cure. I almost typed out, this is it. But I don’t want this to be it. I’m still in my jammies laying on my bed feeling sorry for myself. I’m usually more likely to be giving out advice to someone else who is sick like me, and making them laugh or something really goofy site.

How do I snap out of this? It’s just not going away and I can’t be that fun to be around to the people who are stuck here living with me. And I need to call my bff. I’m 41 and I just said bff. Maybe I am coming back. I need to close the computer and get on the phone.

Until next time,

Michelle

What’s up

What’s up

I’ve been meaning to post here for the past 2 days, but I have been flaring like crazy.  It’s 1:30 in the morning here and it’s the first time in the past 48 hours that I feel almost normal.  I know that there are so many people who have different autoimmune diseases, and other diseases for that matter, and I don’t know how people do it.  How do you get up in the morning and get ready and go about your day?  I want that back in the most desperate way.  I do realize that this is depression talking, and that things WILL get better, but for now I just can’t see the light at the end of the tunnel.  I still have a month left before I see the neuromuscular doc for my biopsy results.  Has anyone had to wait 2 months for results???  So for now, I just keep taking 2700mg of neurontin a day that does absolutely nothing and wait.

OK, enough with the negative venting!  The Big C and I were talking about getting back into shape.  I’m limited in what I can do in the way of excercise, and neither one of us ‘likes’ to work out…So, we have a WII.  And the kids are always playing games on it, but if we could steal some time on it we want to try out WII fit.  I was reading my fav blogs today and came across this post from Marijke from Help My Hurt and I had to laugh. Check out her blog, she has some really great information for anyone with chronic pain.

And that brings me to National Invisible Chronic Illness Awareness Week.  I wanted to write about this on Monday, see above, lol.  My bloggin friend Connie will be speaking this week and I sure hope I didn’t miss it.  But if I did, I heard that it will all be archived, so that is cool.  I will be checking it out tomorrow, God willing, I WILL NOT BE FLARING SO HARD!!!  There.  That will work I’m sure.  There was something else I wanted to write but my head is full of mush so I’m signing out.  Peace.

(snail) image: FreeDigitalPhotos.net

It’s been a while…

It’s been a while…

since I’ve posted anything! The bean says that ain’t cool, and you can tell by the goggles-she’s cool.  These last few weeks have been full of flares and sleep.  Not a lot of fun, and sure not postworthy unless I wanted to get on here and whine-aaaaarrrrgh!

I’m gonna whine a little anyway… he he  I did go and get my biopsies done. We had to go to a bigger hospital than what we have here.  It took 5 months to get in to see this neuromuscular surgeon.  So frustrating.  My burning symptoms have just gotten worse and worse, and even though I knew that just by having the punch biopsies done my burning wasn’t going to go away, I was still frustrated.  No one should have to wait 5 months for an appointment.  When the day came I was so nervous I couldn’t eat anything, so by the time we got there I was starving. We were running late because traffic was really heavy and even though we left 2 hours before the appointment and the drive is an hour and a half, we just barely made it on time.  When we got up to the right floor and found the desk, I handed the receptionist this form that they sent me to fill out prior to the appointment.  She stared at me with an expectant look on her face.  “yeesss?” (I blame my rudeness on low blood sugar)  She said “Didn’t you receive the packet we mailed out to you?”  Ah, shit.  It’s five minutes past the appointment time and she says, “Don’t worry.  Just fill out as much as you can so the medical assistant doesn’t get mad.” WTF?  So, she hands me this packet that’s about half as thick as the phone book and I glance to the left of me where another woman was checking in and she was just reaching out to grab the ‘packet’.  Somebody must’ve been sleeping on mail-all-the-packets-out day.  So we found a seat and I started answering a million questions while my stomach rumbled and grumbled.  I didn’t have any addresses for my docs, or fax numbers and such, and then I answered every question pertaining to my health known to man.  I actually finished it and turned it in.  Finally the medical assistant called me back, and she was nice ( I finished my packet) and we got situated in the room.  When the doc came in he looked tired and cranky and he said “So, they forgot about you.  I’ve been sitting in my office reading for the last hour.”  Turns out the front desk forgot to check me in on the computer and me and the doc both were sitting there for an hour.  Me frantically filling in questions and him reading.  By now I’m so hungry I’m shaky.  So the doc is really cranky and all I can think about is getting the heck out of there so I can eat.  He tells me his partner is going to perfom the biopsies and he leaves the room.  So I’m laying on the table and I’m dreaming of taco bell, jack in the box, biiiig milkshakes, aaaggghhh.  The Doc decides to do them on my left leg because he said that was the worst leg when it came to all of the manual tests-push, pull, poke with a pin, etc.  His partner tells me that she is going to use sterile technique to help ensure no infection will come about.  She says that we have to be careful of infection.  I watch her set up the tray and glove herself and drape me, and what she doesn’t know is that my profession is a medical assistant and had I done that type of sterile technique at work I would have been fired.  It was all wrong!  She leaned her body over the field, no sterile gloves, ugh, and so on.  Oh gawd, I’m already thinking of getting the worst staph infection in the history of, or MRSA or anything completely irrational.  She had me lay on my side and she injected my hip first with a numb-er, I think she said lidocaine, and that hurt like a bitch.  It burned and I squeezed The Big C’s hand and laughed which is what I always do when I’m nervous..it’s like a nervous tic only way more socially unacceptable.  The rest I couldn’t see from my vantage point but C said it was way cool.  This little tool she pushed up against my skin and twisted and twisted. Then she pulled it out and used teeny tiny tweezers and scissors to grab it and put it in a jar.  She did the same on my lower leg above my ankle which burned a million times worse than the hip area.  When I asked her why she said because there is less fat there, more fat up on my hip.  Thanks.  That was it.  She bandaged me up and told me not to get it wet for 3 days.  It was 100 degrees that day and I needed a shower.  So we did alot of taping so I could take cool showers.  End of story.  It has been WAY too long since I blogged.  My next post with be shorter and sweeter 🙂  I miss the blogoshpere, I’m back baby!!!  I just have to stay out of the depression rut that comes with being in pain for too long of stretches.  Man, it’s a killer.  I’m trying to stay happy even if I have to fake it.  If you walk around smiling, it really does help, even if you look like an idiot, it wards of the blues.  Usually.  Sometimes.  Well, it worked today anyways.  I need to thesaurus the word anyways, I use it too much.  Regardless, I will use that word more often.  BTW, anyways wasn’t in there.  It’s anyway.  sigh.

It’s good to be back, until next time, with no whine!

And they go unanswered, for now…

And they go unanswered, for now…

I had a feeling that this would happen.  I’ve experienced it far too many times these past couple of years.  When a doc doesn’t know what to do, they throw in the towel.  My husband called the rheumy’s office for the blood test results and was told by the nurse that the lab missed running the sed rate but all the other numbers looked OK.  So my doc didn’t think it was autoimmune related.  That’s it. period.  I feel very abandoned, I don’t know where to turn now.  They didn’t even want to run the sed rate again, I felt very much like he thinks I’m being a whiner, or worse than that a malingerer.  I don’t know what’s happening to my body, and before getting sick I didn’t have any problems so of course I think it’s autoimmune related.  Suffice it to say, yesterday I had the blues big time.

I find out today the lab results from the neuro’s office.  sigh.  Maybe he can help me, I just don’t know.  I’m still waiting for the referral to go through for the punch biopsy he wanted to have done at the hospital up north…maybe my muscles are related to the small fiber neuropathy.

When I started this blog, I wanted it to be a forum for other people who were going though some of the same issues I am and to share some knowledge that I’ve acquired.  I need to focus on that for now, I certainly didn’t want this site to be a TOTAL whinefest from me, I’m just really scared right now.  I can’t control my muscles, and not only is it painful, it is very scary.

I need to start thinking positively and try and figure out my next step in this.  We learned very early on that we have to be our own champions, I need to figure out where to turn for help now.

If anyone has had any similar episodes with their muscles, I would love to hear from you!

Now, I am going to focus on flipping this back into the blog that I wanted it to be 🙂  I’d like to do a review on one site a week of the places that I’ve found to be very helpful, supportive, and informative.  So that’s my mission for today!!  Positivity and some research.

Until next time…

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